Caring for Older Adults with Disability: Lived Experience of Family Caregivers in Rural Thailand

ABSTRACT

CARING FOR OLDER ADULTS WITH DISABILITY: LIVED EXPERIENCE OF FAMILY CAREGIVERS IN RURAL THAILAND

by Parnnachat Tipsuk

The main purpose of this study was to understand the experiences and everyday life of family caregivers who are taking care of older adults in rural Thai villages. This study applied a phenomenological approach consisting of interviews with ten participants who willingly shared their personal experiences on caregiving to the elderly. Based on the findings, family caregivers experienced various feelings during their care duties. Those were 1) changing in their life path; 2) suffering alone; 3) double trouble; 4) disheartenment; and 5) the need for freedom. The justifications, which persuaded family caregivers continuing to undertake caring duties for disabled older adults were 1) compassion; 2) moral responsibility; 3) commitment; and 4) belief in the law of karma. The findings also revealed that the older adults who had an unhealthy relationship with his/her caregivers would not be provided with the best care. Many case studies shown people’s bias against caregiving for the elderly. This study highlighted some key recommendations, such as health resources, rewards, encouragement, and material assistance should be provided to family caregivers. The need for family-oriented mental health services should be developed and the more certain interventions should be made in support of the well-being of family caregivers in rural areas, especially among the aged spousal caregivers. The experience of family caregivers in urban areas and other regions should be conducted in future research.

CARING FOR OLDER ADULTS WITH DISABILITY: LIVED EXPERIENCE OF FAMILY CAREGIVERS IN RURAL THAILAND

A Thesis

Submitted to the

Faculty of Miami University

in partial fulfillment of

the requirements for the degree of

Master of Arts

Parnnachat Tipsuk

Miami University

Oxford, Ohio

2016

Advisor: Pramote Prasartkul, PhD

Reader: Chai Podhisita, PhD

Reader: Jennifer Kinney, PhD

This Thesis titled

CARING FOR OLDER ADULTS WITH DISABILITY: LIVED EXPERIENCE OF FAMILY CAREGIVERS IN RURAL THAILAND

Parnnachat Tipsuk

has been approved for publication by

The College of Arts and Science

and

Department of Sociology and Gerontology

______Pramote Prasartkul, PhD

______Chai Podhisita, PhD

______Jennifer Kinney, PhD

Table of Contents

Chapter 1: Introduction……………………………………………………….………….…... 1 Introduction to the Problem………………………………………………….……….….. 1 Rational of the Study…………………………………………………………………....… 1 Purpose of the Study…………………………………………………………………….... 3 Statement of the Problem and Research Questions……………………………….….... 3 Definition of Terms………………………………………………………………….…..... 3 Chapter 2: Literature review…………………………………………………………………. 4 The Concepts of Caregiving………………………………………………………...... …. 4 Family Caregiving in Thailand…………………………………………………………... 5 Justification for Elderly Caregiving in Theoretical Perspective…………………….... 5 Research Related to the Life experiences of Caregiving…………………….………... 6 Conceptual Framework…………………………………………………………………… 8 Chapter 3: Research Methodology………………………………………………………….. 10 Research Method and Design………………………………………………………..…... 10 Setting………………………………………………………………………………………. 10 Participants……………………………………………………………………...... 11 Summary of Demographic Characteristics of the Cases………………………………. 12 Materials and Data Collection…………………………………………………...……….. 13 Data Analysis Process…………………………………………………………………….. 13 Creditability………………………………………………………………………………... 14 Ethical Consideration…………………………………………………………...... 14 Chapter 4: Presentation of Findings……………………………………………………..….. 16 Summary of Caregiving Experience………………………………………………...…... 16 Emerging Themes………………………………………………………….…………….... 18 Chapter 5: Discussions and Conclusion…………………………………………..………… 32 Elderly-caregiving Experience………………………………………………………...…. 32 Phenomenological Description………………………………………………………...… 33 Social Exchange Theory Discussions……………………………………………...... ….. 35 Family Caregiving Trend in the Thai Contemporary Society………………...... …….. 37 Summarizing the Study…………………………………………………………………… 38 Chapter 6: Implications and Recommendations………….………………………………... 40 Summarized Conclusion………………………………………………………………….. 40 Relevance and Significance of the Study……………………………………..…...……. 41 Implications and Recommendations…………………………………………………...... 41 Strength and Limitation…………………………………………...……………………… 42 References……………………………………………………………………...………. 44 Appendix A The Stories of the Family Caregivers……………………………….……….. 48 Appendix B The Brief Stories Related to Social Exchange Theory…………...……...…. 55 Appendix C Questions to Guide the Interview…………………………………………..… 57

iii

List of Tables

Table 1: Demographic Characteristics of Participants………………………………...... 12 Table 2: Summary of Family Caregiver’s Experience…………………………………...... 16

List of Figures

Figure 1: Conceptual Framework of the Study…………………………………….…..…... 9 Figure 2: Finding the Cases for Interviews…………………………………...……...... …... 11 Figure 3: A Summary of What It Feels Like to Be a Family Caregiver? ………..……… 18 Figure 4: A Summary of the Justification for Providing Care………………………...... 26 Figure 5: Factors Influenced to Elderly Care…………………………...………………..… 40

Acknowledgements

First of all, I am indebted to the National Research University (NRU) for awarding me the scholarship to pursue this master degree and to the Department of Sociology and Gerontology, Miami University - USA and Institute for Population and Social Research, Mahidol University - Thailand for all supports and fulfilled me invaluable knowledge about the subjects. The accomplishment of this thesis can be succeeded by the attentive support from my advisory professors - Professor Pramote Prasartkul, main advisor and Associate Professor Chai Podhisita, co-advisor. I deeply appreciates them for guidance in conducting and writing research, and their solicitude during I had a health problem. Especially, I would like to say “THANK YOU” million times to Professor Jennifer M. Kinney, my co-advisor, for her very kindness, encouragement, admiring words. This thesis could not have been possible if without her great attempt on copyediting and her useful recommendation to improve my thesis to be better. I thank my external examiner, Assistant Professor Suvinee Wivatvanit, for her great recommendation. Additionally, I would like to thank the entire respondents who were the sampling in this study. Essentially, I would like to thank my best friend, Ploychompu Sukustit, for all assistance – accompanying me to the study field and facilitating all studying process. I am indebted her. I would like to convey my sincere gratitude to my two supervisors - Associate Professor Sureeporn Punpuing and Saowapak Suksinchai for their great reinforcement. I thank my senior colleagues and favorable companions at IPSR– for boosting power during my weariness. Finally, all practicality of this thesis I dedicate to my father who passed away in 2003, and my mother who is patience in everything about my weird identity.

Parnnachat Tipsuk

Chapter 1: Introduction

Introduction to the Problem A concern about population aging has become intense in Thai society for over the past two decades. As assumed by Knodel, Chamratrithirong, and Debavalya (1987), a successful implementation of a family planning campaign would rapidly lead to a higher percentage of senior people in the total population and simultaneously a decreasing number of caregivers for these elders. This assumption was supported almost twenty-five years later, when Thailand became an aging society (i.e., people aged 60 and over accounted for approximately 12 per cent of total population). As anticipated, the lack of caregivers for older adults has intensified. This is due to social changes, which influence caregiving patterns and attitudes of younger generation toward caring for older people. Traditionally, within the Thai cultural context, family members are the main care providers for aged parents. These providers are mostly spouses and adult children, mainly daughters and daughters-in-law (Knodel & Chayovan, 2011). The culture of elderly caregiving in Thailand is rather unique, based on the Buddhist ideology of “parent repayment” (Cafrey, 1992, p.117). Disregarding care of aging toward parents is seen as a disrespectful way and not a common practice. Cafrey (1992) explored caregiving for older adults in rural areas of Northeast Thailand, and reported three primary motivations for caregiving: 1) honoring the cultural norm of filial responsibility; 2) love or affection for the older adults; and 3) a desire to reciprocate for past attentions and to build up future merit for themselves. The practice of providing care for and supporting older adults has been passed down from generation to generation. As time goes by and concurrently socioeconomic changes, elderly caregiving situation has been challenging to Thai society because attitudes toward the elderly and caring patterns has grown progressively obscured. A recent study by Knodel et al. (2013) notifies that modernization has been affecting Thai family supports as the turndown of “intergenerational solidarity.” This phenomenon implicitly indicates the unstable pattern of traditional care of the elderly, implying a lack of kinship related caregiving in the future. Currently, there are few policies and actions that encourage family members and communities to realize the importance of caring for aging people in today’s vulnerable society.

Rationale of the Study The advancement of health technologies explains the rapid increase in the number of Thai older adults who have been enjoying a longer life compared to older adults in the past. Yet these long-lived elderly face age-related health problems. It is a fact that health conditions gradually deteriorate when a person becomes aged, and this limits the body’s normal functions, which may be further limited due to risky health behaviors in middle life. The findings from the multistage cross-sectional National Health Examination Survey (NHES, 2009) IV of 9,210 Thai older adults aged 60 years and over reported that chronic illnesses commonly found among older people were depression, hypertension, and diabetes. Especially, the latter two pose a risk of disability. When considering dependency in activities of daily living (ADLs), roughly 0.6 – 11.9 per cent of Thai older adults have one or more basic ADL limitations: bathing, getting dressed, eating, toileting, and walking. Overall, the prevalence of functional disability in ADLs was found to be 15.5 per cent (NHES, 2010). To maintain good living condition, the weak elderly person needs to have special attention from a caregiver. Consequently, caregivers will be more in need due to the growing number of elders with disability.

Family caregivers are important to the family having feeble elders. Either voluntarily or involuntarily, many of these caregivers devote full-time care and are pleased to accommodate the poor elderly. The studies from western countries reveal family caretakers’ experience in various dimensions. On the negative side, several researchers have found burdensome and stressful feelings among caregivers. The four main-dimensional strains, namely physical, mental, social, and economic, have also been found in caregivers who handle many family responsibilities. Some studies examined positive aspects of caregiving, especially in regard to emotional satisfaction from caring for the loved one. Some positive examples are the developed relationship between the caregiver and care recipient and that, by not working outside the home, the caregiver does have the leisure time as same as before becoming a caregiver (Lopez, Lopez- Arrieta, & Crespo, 2005). There are copious research studies investigating the meaning of caregiving as perceived by family caregivers. Interestingly, McCallum (2006) suggested that having positive cultural beliefs about caring for older adults and stronger religious beliefs was associated with better mental health among caregivers. While the aging population is attracting the Thai society’s attention, family members as a primary caregiver have also been lighten up due to their roles as a significant supporter to provide primary care to their elderly. Previous studies primarily concentrated on the patterns of caregiving toward older adults and directly targeted to the elderly who were the recipients of care. Most of recommendations of the studies mentioned on how to taking with the best care to elderly recipients, without concerning to the feelings and tough situations of caregivers. A large and growing body of quantitative literature has investigated caregiving, whereas fewer studies address how individual caregivers interpret their situations. In addition to this, existing studies rarely investigate the experiences of individual caregivers as they deal with family responsibilities and challenges from social changes. For the above reasons, this qualitative study examines the real life of family caregivers by targeting those providing primary cares to their loved ones and living in Thailand’s rural areas. Other reasons behind this study are that, first, the rural-to-urban migration of young generation leave old aged people alone at home and this results in the shift in living arrangements. According to an investigation by John Knodel (2009), over the last two decades the percentage of elderly people living with spouses only or living alone have increased continually, whereas the percentage who live with adult children has decreased gradually. This phenomenon portrays a tendency for old adults to have their spouses or non-family-member persons as the caregivers instead of their own children. This study examines how spouse- caregivers or non-blood relatives feel about caregiving. For the adult children who co-reside their dependent aged parents, this study examines the attitudes about making a balance life between occupation, their own family, and the role of caregiver to care for a frail elderly. Second, nearly three-fourths of older adults (70 per cent approximately) live in rural areas (National Statistical Office [NSO], 2007). Of 13.8 percent of rural elderly are poor while urban elderly make up 4.6 per cent. The NSO (2007) also reports that 1.2 million older adults in rural areas report self-assessed poor health, as do 0.4 million older adults in urban areas. This indicates that there is a remarkable difference in access to local health care. In the face of geographic distance and limited healthcare facilities in rural Thailand, family members, therefore, have huge responsibilities and stress associated with providing adequate care to their older parents and relatives. The abovementioned reveals a fact about family situation changed and a gradual increase of poor health elderly in Thai rural areas. The assumption of this study is to prove whether the

2 perspectives of persons who are family caregivers for the elderly vary by social circumstances. Using a phenomenological approach is the most likely way to gain a clearer understanding of caregivers’ varied experiences. The results of this study will provide fundamental knowledge that will benefit gerontological social science. Moreover, the study is a noteworthy proof that taking care of elderly people with love and respect is a contemporary view. The findings will also have practical implications for health practitioners and social workers, helping them to better understand family caregivers’ feelings. Accurate understanding will be useful to generate appropriate interventions and programs to promote the well-being of both caregivers and the old adults who are receiving care.

Purpose of the study The main purpose of this study is to understand the experiences and the everyday life of family caregivers who are taking care of older adults in rural Thai villages. The study also aims to understand the meanings of being a family caregiver and providing in-home care in the Thai cultural context.

Specific Objectives 1. To find out the feelings of being a family caregiver 2. To explore the justifications for providing care for an older adult

Statement of the Problem and Research Questions This research explores the lived experience of family caregivers who taking care of dependent older adults in rural villages. A phenomenological perspective is applied to obtain the real perceptions of caregivers. To accomplish these aims, a qualitative approach using a phenomenological concept was applied in order to explain the lived experience of being a family caregiver who looks after an older adult with disability. The core question explored was: “What is it like to have a caregiving experience?” Specific questions included: 1) How do family caregivers feel? and 2) Why do family caregivers provide care?. The family caregivers were interviewed to reveal their life events. Similarities of caregivers’ story-telling were inferred in themes and the emergent themes did analyze in accordance with the Thai socio-culture context.

Definition of terms The following definitions are to ensure uniformity and understanding of these terms throughout the study. Caregiving: An action of providing unpaid assistance and support in terms of physicals aspect, such as bathing, getting dressed, and walking, that maintain or improve older adults’ quality of life. Family caregiver: “Family caregiver is a spouse, adult child, other relative, partner or friend who has a personal relationship with, and provides a broad range of unpaid assistance, for an older adult with a chronic or disabling condition” (Family Caregiver Alliance - National Center on Caregiving, www.caregiving.org). Dependent older adult: A person aged 60 or over who lives in Kanchanaburi province and has disability that requires daily caregiving.

Chapter 2: Literature Review

The Concept of Caregiving In general, the term “caregiving” is defined as an act of providing direct care and support to family members or relatives who have physical, mental, or emotional needs. Caring for others takes on three forms: “instrumental,” “emotional,”, and “informational caring” (Drentea, 2007). According to AARP (1997), family caregiving is “typically performed by relatives and close friends for a person who is no longer able to manage all aspects of his or her daily life and/or personal care. It generally involves everyday activities related to managing a household, or to performing personal care, such as dressing, bathing, toileting, and feeding. By providing unpaid assistance and support to older family members or friends who need it, informal caregivers or caregiving may help evade or restrain institutional placement of older person, or the need for paid caregiving services” (pp. 5-6). Caregiving is commonly perceived as the function of doing care for older adults, sick or disabled persons. Caregivers, typically, are family members, who take responsibility for giving care to their parents or close relatives in old age who have health problems and/or are unable to care for themselves. Formal caregivers also include people who perform the job of caregiver in home or nursing settings, providing care for older adults or disabled people in exchange for financial compensation. Theoretically, there is the delineation of the term ‘caring’ or ‘caregiving’ with many ways. The meaning of caregiving has been frequently studied from a phenomenological perspective. As stated in the study by Mayeroff (1972, p. 1), “To care for another person, in the most significant sense, is to help him grow and actualize himself”, and also the eight essential elements were synthesized from her exploration, those are: knowing, alternating rhythms, patience, honesty, trust, humility, hope, and courage. Swanson (1991) presented five processes of caring; ‘knowing,’, ‘being with,’ ‘doing for,’ ‘enabling,’ and ‘maintaining belief.’ These are commonly used in the field of nursing. Noddings (1984) endorses that the feeling to care derives from an inside sight or ‘commitment’ which changes continually. Nyberg (1989) posits that caring for someone as a part of individual life which comes from satisfied feeling and an obligation to maintain the person growing. In accordance with Mitchell (1990), caregiving is a lifetime of human in health treatment which composed the feelings of consideration, burden, and attention. Concisely, Van der Wal (1992) concludes that caring is as ‘an innate human attribute or potential’; this is ‘because they are human beings' (p. 62). This is consistent with the definition of Roach (2002), who explained that “caring is the mode of human being. Caring is a total way of being, of relating, of acting; a quality of investment and engagement in the other in which one expresses the self fully and through which one touches most intimately and authentically what it means to be human” (p. 2). Watson (1985) found that caring is associated with ‘protection, enhancement, and humanity preservation’. Besides, it implicates ‘ethics,’ ‘willingness,’ ‘promise on caring,’ ‘caring practices,’ and ‘results’. Caring for people is the intersubjective responses of person to health-illness conditions. Differently, Kahn (1993) defined caregiving as “‘a witnessing of others’ journeys such that they experience themselves as joined, as seen and felt, as known, and as not alone, which are the core experiences of feeling cared for” (p. 544). As shown above, the meanings of caregiving are varied by depending on background and experience of caregivers, and on interpretation of researchers.

Family Caregiving in Thailand There is a convergence of social and demographic factors that yield an upsurge in the likelihood that middle-aged and older adults will become family caregivers (Marks & Lamberts, 1997). First, a dramatic increase in life expectancy at birth in Thai males and females since 1950- 1955 caused the rapid growth of the aging population. Fifty years passed and Thai people were living longer and expected to live to 71 years in 2000-2005. It is estimated to rise further to 76.8 years in 2025-2030 and 79.1 years by 2050. On average, females are expected to live approximately nine years longer than males. Additionally, elderly people constitute a growing proportion of the population in Thailand. In 1950 only about five percent of the Thai population was aged 60 and over and seven percent of the population was elderly by 2000. The projections are that by 2050 almost 30 percent of the overall Thai population will be over age 60 (UNFPA, 2006). Second, age-related chronic diseases and health problems will cause an extended period of disability and need for caregiving during later life. In the past, infectious diseases – typhoid, diphtheria, pneumonia, whooping cough, and tuberculosis – were the major causes of death. At the present time, chronic sickness such as diabetes, arthritis, musculoskeletal disorders, heart disease, cancer, etc. is the major health threat causing concern to public health (Marks & Lambert, 1997). In Thailand, there is some evidence that elders are not living with good health. The major health risks among elderly women are hypertension and diabetes, whereas for men they are tobacco consumption and hypertension (UNFPA, 2011). Third, family transformations including the fertility transition has significantly changed over the past few decades. The impact of family planning in the 1970s has caused fewer births. Contemporarily, the cost for childbearing was high and having few children advantaged modern families. The increasing female labor in the formal sector caused delayed marriage for reproductive aged women until now (UNFPA, 2011). Apparently, a larger proportion of the female labor force has balanced their labor force job, household work, and also caregiving for dependent persons. During caregiving, women may encounter role conflict and strain. Men as caregivers have been more found in the period of population aging. Finally, in families where children have out-migrated, the children give support for the well-being of aging parents, and the primary caregiver is the one who does not fall ill or weak or needs assistance. It is noteworthy that the aged parents would take care of each other whereas adult children provide financial and material support. To briefly conclude, population aging has increased the need for family caregivers. Socio-economic factors have caused changes in traditional family caregiving. Family caregivers contribute significantly to the elderly so that the elderly do not live lonely and suffer. On the other hand, another fact reveals that the increasing dependent older adults parallel the increasing requirement of family caregivers. This fact indeed implies a huge economic loss and, therefore, there should be measures concerning mental and physical care for these family caregivers to balance their career and elderly care.

Justification for Elderly Caregiving in Theoretical Perspective Social exchange theory is used to explain the reason for being a family caregiver. This theory is rooted in the 1950s and is a mixture of economics and psychology and was presented by sociologist George Caspar Homans. The key of this concept is an interaction between individuals by having the exchanges of material and non-material. Individuals make a decision to have a relationship with someone because they perceive the benefit they gain is more valuable

5 than the costs they incur in the relationship. To the contrary, individuals discontinue a relationship with someone when they are afraid that they may give too many resources to the relationship and not get back as much in return. Molm and Cook (1995) constituted the four assumptions of social exchange theory as the following: 1) “Relationship between individual depends on the worth of the things exchanged”; 2) “Positive behavior of individual responds to extra reward and the negative devalues reward”; 3) “Individual involves in enduring, mutually reliant on exchanges with certain partners all the time”; and 4) “All outcomes lessen marginal usefulness, in opposition, upturn marginal” (p. 210-211). One basic tenet existing in social exchange process is the rule of reciprocity or repayment in kind. As Cropanzano and Mitchell (2005) said, there are three different concepts of reciprocal exchanges. Reciprocity as “interdependent exchange,” “as a folk belief,” and “as a norm and individual orientation.” Reciprocity as interdependent exchange refers to outcomes based completely on another person’s attempt. Reciprocal interdependence accentuates conditional interpersonal transactions. If individual provides a benefit, the receiver should respond to such benevolence. Reciprocity as a folk belief is a cultural perspective that people should derive an equal exchange of things from relationships. People who are helpful will get return in the future; people who are unhelpful will receive punishment. Reciprocity as a norm and individual orientation is a universal principal that people should act reciprocally. Social exchange theory is often used to describe intergenerational social support and transfers in social gerontology (Burnight & Mosqueda, 2011). In terms of caregiving to an elderly adult, it can be seen why some older people receive material and non-material supports from their offspring, and why some elderly have been isolated. According to the rule of reciprocity, offspring provide caregiving to aged parents/relatives because they have been given mercy, nurture, land and properties, or making-a-living tools from the elderly. As a social norm, caring for aged parents is a good act that deserves glorification, whilst abandoning the elderly is likely to result in condemnation from people.

Research Related to the Life Experiences of Caregiving Numerous studies have described the caregivers’ life experiences in different dimensions. In the aged countries, qualitative research on subjective experiences of caregivers is conducted to seek knowledge or interventions for practitioners (especially health and social workers) dealing with the individuals who face various problems in providing care to the elderly. Cornell (2003) has studied the lived experiences of adult caregiving daughters (N=78) to seek the themes of caregiving. The studied cases are dedicated to protect and preserve their mother’s physical, mental and emotional integrity. Daughters feel fatigue in the physical and emotional constancy of caregiving and in balancing the role as daughter and caregiver. They also feel unprepared for the expectations of caregiving and uncertainty about future care needs when their mothers’ health deteriorated. This study suggests that an understanding of this experience can help nurses’ assessment of the needs of the elderly and their caregiving daughters and help them to normalize the caregiving experience. Owens (2004) conducted interviews with seven daughter caregivers who take care of their elderly parents in the parents’ home. Owens found ten key themes: 1) ‘being torn between worlds’; 2) ‘embracing the entirety of commitment’; 3) ‘a crucible of individual human effort’; 4) ‘a means of self-discovery’; 5) ‘a thread that can interlace a family together or cause it to pull apart’; 6) ‘an experience of reciprocity’; 7) ‘a doorway to intimacy’; 8) ‘the effort to uphold the autonomy of the parent’; 9) ‘grieving the decline of the parent’; and 10) ‘making the greatest use

6 of the time left with a parent’. The judgements of this research were analyzed through the attachment theory and caring theory. A study by Mendez-Luck, Kennedy, and Wallace (2008) examined how women (N=41) in a Mexico City suburb conceptualized the construct of burden within the context of giving care to older relatives. This study applied phenomenological principles to analyze meanings and understandings of caregiving experiences. The results show caregivers have both positive and negative views regarding the burden of caregiving. Considering the positive, caregivers accepted that caregiving could be a rewarding and uplifting experience; negatively, they viewed burden an undesirable state of dependency that inflicted stress or pain on others. Ten in-depth interviews on Indian family caregivers’ experiences in the context of mental health conducted by Banerjee and Dixit (2011) revealed remarkable findings that were categorized into three board themes: suffering, acceptance and resilience. They suggested that the family caregivers cannot separate their suffering from the patients’ suffering, but accept the difficulties of their roles and they became resilient over time. They also thought of their roles as carers and the caregiving tasks as part of their lives or ‘dharma’ (compulsory social responsibilities toward others). When looking at the family involvement within assisted living, Solomon (2011) employed a phenomenological approach to conduct in-depth interview sessions with eight pairs of participants, comprising senior residents from five assisted living services and their caregiving family members, typically a daughter or son and, in one case, a close friend. The three dominant themes that emerged from care-receivers and their caregiving relatives' experiences, which characterized and obstructed their family involvement, are: 1) ‘coping efforts and attitudes that characterized the aging, the care-receiving, and the caregiving processes’; 2) ‘enduring and changing roles and relationships in family structures’; and 3) ‘the paradox of institutional long- term care, as it created both relief and stress for aged care-receivers' and their caregivers in family systems’. McCarty (1996) examined the experience of seventeen women using grounded theory. Results indicated that there should be attentiveness to ‘the interrelationship between caregiver stress and the contextual aspects of social support, coping, and the nature of the prior filial relationship’ (p. 800). Focusing on the impact of caregiving on the health and psychological well-being of family carers, Kenny, Sarma and Egan (2012) studied six family caregivers using interpretive phenomenological analysis. Two super-ordinate themes emerged from the analysis of interview transcripts. The first theme was labeled ‘feeling helpless to being wise.’ The second theme was ‘perceptions of support.’ The latter relates to family carers' personal coping processes and self- constructions as a carer, and to family carers' perceptions of support and predominant challenges of support seeking. The findings demonstrated an evolving self-construction and explanatory framework for the tasks of caring among family caregivers at dissimilar points along a caring trajectory, with evidence of positive reappraisal processes. Boland and Sims (1996) adopted a grounded-theory method to investigate the caregiving experience of seventeen families. The samples was family caregivers who were taking care of dementia and Alzheimer’s disease patients. Meaningfully, this study discovered the main theme – ‘caregiving as a solitary journey’ which was comprised of ‘burden’, ‘responsibility’, ‘isolation’, and ‘commitment’. Likewise, Parsons (1997) employed a phenomenological perspective to describe the experiences of eight men who were primary caregivers for a family member living with Alzheimer's disease. Eight themes emerged from this investigation: 1) ‘enduring’; 2) ‘vigilance’; 3) ‘a sense of loss’; 4) ‘aloneness and loneliness’; 5) ‘taking away’; 6) ‘searching to discover’; 7) ‘the need for

7 assistance’; and 8) ‘reciprocity’. Gates (2000) piloted a phenomenological inquiry to search the meaning of caring for an elderly relative. Nine middle-aged and older adults took part in this research. The findings of this study explains the suffering remembrances during caregiving, including sorrow and loneliness. Lowenstien and Katz (2000) examined the coping patterns of rural Arab families who were caring for chronically ill elderly relatives. This study was conceptualized within the framework of intergenerational solidarity versus contradiction and applied a qualitative approach based on the phenomenological paradigm. Data were collected by means of in-depth interviews with ten family units who had chronically ill homebound elders. The results indicated the uniqueness of handling patterns among these caregivers with regard to two main components: ‘contradictory to findings in the family caring literature’; and ‘differences in the gender of child caregivers and the family readiness to use assistance from formal support systems’. Using in-depth interviews with 15 in-home caregivers regarding the meaning of activity in caregiving, Hasselkus (1989) found that the family caregiver was conceptualized as a lay practitioner involved in the clinical reasoning and ethical dilemmas that were integral to the provision of health care for the care receiver. The caregivers’ judgments regarding the prioritization and accomplishment of goals determined the forms of caregiving activities. Butcher, Holkup and Buckwalter (2001) studied the experience of family member taking care of people with Alzheimer's disease or a related disorder (ADRD) living at their house. They used mix methods and a phenomenological perspective to find essential themes. The seven crucial structural elements that appeared from the analysis were: 1) ‘being immersed in caregiving’; 2) ‘enduring stress and frustration’; 3) ‘suffering through the losses’; 4) ‘integrating ADRD into our lives and preserving integrity’; 5) ‘assembling support’; 6) ‘moving with continuous change’; and 7) ‘finding meaning and joy’. Wallhagen and Yamamoto-Mitani (2006) explored elderly caregivers who were daughters (or daughters-in-law) in the United States and Japan in order to make a comparison of the effect of cultural values on the meaning of being a caregiver. In-depth interviews were conducted with nine American and seven Japanese caregivers. The findings reveal two main themes, moral obligation to care and intense loss. The differences in caregiving in the two cultures with three themes, namely ‘reasons for caregiving’, ‘caregiving as a career’ and ‘caregiving as a life phase’. The results of these literature shows that the meanings of caregiving are vary as a function of different characteristics - sex, relation to the elderly, household responsibility, and readiness, for example. Most caregivers reveal both positive and negative feelings associated with taking care of the elderly. About positive feelings, they think caregiving experiences are a reward, uplifting and a way of paying back the older adult (i.e., reciprocity), and use of the remaining time with old parents. On the other hand, caregivers suffer from physical tiredness, loneliness due to a lack of social support, feelings of loss and sorrow and so on. As for the reasons for caregiving, caregivers said that providing care for the elderly is a moral obligation, is a career, and is a life phase.

Conceptual Framework of the Study This study focuses on caregivers to older adults in rural villages and how they feel about performing this duty. This qualitative study intends to clarify the things that family caregivers encounter to in the period of doing that duties. The purpose of the study is to document participants’ perceptions of the positive and negative aspects of their role as caregiver.

Figure 1: Conceptual framework of the study

Personal and demographic characteristics: age, economic status, no. of household members, role in household, health status

Caregivers’ ability to deal Life experience: with emerging duty: - Emotion (positive / negative) resilience, readiness, gained - Perspective behind support, information caregiving performances - A way to do caregiving

Attitude toward care- receiver: Relationship with care-receiver, religious beliefs, satisfaction and reciprocity

Chapter 3: Research Methodology

Research Method and Design This qualitative study is intended to explore and understand the meanings of caregiving defined by family caregivers. By using a qualitative method, the researcher interprets the meanings of data collected at the participant’s locations. The applied resources for gaining particular data are the emerging questions which the role of the researcher is an interviewer (Cresswell, 2007). This research study seeks to obtain a profound comprehension of the lived experience of Thai family caregivers living in rural villages—to document how they feel about and why perform the duty of caregiving. The phenomenological qualitative strategy utilized in this study contains a concept that explicates the connotation for several persons of their lived experience. The shared meanings from fruitful discussion were proved to assist the process to profoundly comprehend the caregivers’ real situation. As defined by Cresswell (2009), “Phenomenology is a research strategy of inquiry in which the researcher identifies the essence of human experiences about a phenomenon as designated by participants” (p.13). As characterized by Moustakas (1994), “Phenomenology seeks meanings from appearances and arrives at essences through intuition and reflection on conscious acts of experience, leading to ideas, concepts, judgments, and understandings” (p.58). For the term given by Willis (2007), “Phenomenology (is) focused on the subjectivity of reality, perpetually pointing out the need to understand how humans view themselves and the world around them” (p.53). Van Manen’s (1989) stated, “An appropriate topic for phenomenological inquiry is determined by enquiring of the critical nature of lived experience: a certain way of being in the world’ (p.39)”. As such, this research study sought the meaning of family caregiving through the eyes of family caregivers who has chanced upon caring disabled older adults for some period. To summarize, the qualitative study using a phenomenological design contributed an understanding in the themes and definitive patterns delineated by the studied participants. In- depth interview represents an implement that brought certain experiences to light. Identification of commonalities of these persons who voiced their opinions about caring for an older adult provided comprehensiveness in understanding the social and psychological phenomena.

Setting Kanchanaburi, a western province of Thailand and a research site, is about 130 kilometers from the metropolis Bangkok. Kanchanaburi had a total population of 838,269 according to the 2012 census; 36 percent of the total population live in urban areas, whereas 64 percent live in rural area (www.nso.go.th). At the present, the proportion of Kanchanaburi’s population aged 60 and over is about 12 per cent. Women live longer, 81 years on average, compared to 76 years for men (nationwide, the life expectancy at birth is 75.0 for women and 66.5 for men). The per capita personal income of people is 61,620 baht per year (Kanchanaburi Public Health Office, 2013). The momentous characteristic of Kanchanaburi is the demographic database. Kanchanaburi is the field research center, operated by the Institute for Population and Social Research, Mahidol University, on the surveillance of population change. This yielded access to eligible cases without difficulty. Participants in this study were from rural villages in this province. The reasons behind the site selection were that over half of the total population lived in rural areas where the Thai customs, especially traditional family system, still exists. Along with

10 traditional practices, urbanization has kept infiltrating into people’s lives such as increasing situation of internal migration. The assumption of this study led to the perception that social change is an unavoidable situation and influences to the attitude of family caregivers who are looking after older adults.

Participants Key informants were the family members who were taking caring of frail older adults at their home. Study participants were selected after meeting the following criteria: 1) Having a close relationship with the disable older adults 2) Being a member of the family or a member of community and aged over 15. 3) Currently taking care of older adults (aged 60 and over) at home.

These participants had the experience of being family caregivers providing care to their dependent older adults at home, specifically in rural villages. Using the criteria above, ten primary caregivers offering home day-to-day care to older adults with chronic illness or functional disabilities participated in this study. Selected participants were taken from two main sources, from the existing listing of a project, and via word of mouth. 1) Some background information for four eligible caregivers came from the project “Demographic, Socioeconomic, and Cultural Surveillance and Long Term Care for the Well- Being of Thai Elderly” conducted in the year 2011 by the Institute for Population and Social Research (IPSR), Mahidol University. 2) This study adopted the snowball approach to find the remaining six carers. They were not in the list of IPSR’s project, but from verbal recommendations by a village leader and interviewed participants who kindly informed the researcher about other family caregivers in nearby villages who were caring for the dependent elderly.

Figure 2: Finding the cases for interviews

Eligible cases from Cases from the list Snowball sampling

Summary of Demographic Characteristics of the Cases Ten informants were interviewed, eight females and two males. Table 1 provides relevant key characteristics of each participant.

Table 1: Demographic characteristics of participants

Caregivers Care recipients Approx. Name Sex Age Marital Current Sex Age Health status Relationship years of status job caring 1. Noom F 69 Married None M 83 Parkinson wife - husband 5 2. Wipa F 62 Married Farm worker M 63 Partial Paralysis wife - husband 5 3. Suda F 65 Married Daily paid M 65 Lameness wife - husband 2 worker 4. Cham M 70 Married Farm worker M 62 Blind husband - wife 5 5. Chuay M 79 Married Farm worker F 79 Hip fracture husband - wife 2 6. Boon F 44 Divorced Food-seller F 86 Senility daughter - mother 3 7. Jurai F 58 Widowed None F 89 Emphysema daughter - mother 3 8. Lumduan F 49 Married Seasonal M 70 Depression daughter - father 5 worker 9. Lawan F 60 Married None M 64 Quadriplegia friend’s wife – 2 husband’s friend 10. Kaew F 31 Married Farm worker M 83 Diabetes& gout daughter-in-law – 2 Father-in-law

*Names were changed in order to protect participants’ identities. Characteristics of family caregivers. In the group of ten participants, eight were females while two were males. The participants’ ages ranged from 31 – 79 years old with an average age of 59 (SD =14.0). Over half of them fell in the aged 60 or older. This means that the caregivers in this setting were mostly aging women. Eight female participants were currently married; one female was widowed and one divorced. The main job for the family caregivers who were still at work was farm worker, even among the participants aged over 60. Three participants were not working. One female participant was a food-seller at her home. The other four were the workers in farms, one participant was a daily paid worker, and another was a seasonal worker. Relationship between caregivers and care-receivers. There was variety in the kinship ties of the caregiving dyads. Spouse dyads were mostly found in this study. Three out of five caregivers were the wives who looked after their husbands; the other two caregivers were husbands. There were three daughters looking after their parents. The last two caregivers had non-blood relationship with their care recipients, one was a friend and the other one was a daughter-in-law. Approximate years of caring. Most participants had been giving care for over two years. The average year of caregiving is approximately three years. Characteristics of care recipients. The age of care recipients ranged from 62-89 years old with and average age of 75. Seven in ten care recipients were male, the other three were female. The care recipients has been living with chronic diseases such as paralysis, Parkinson, depression, gout, and age-related diseases.

Materials and Data Collection Prior to entering the research site, all participants were phoned to schedule interview and on interview day, they would be relaxed after getting familiarized with the interviewer and in the informal interview arrangements. All interviews took place at caregivers’ house. Prior to the interview session, the researcher did self-introduction and briefed the interviewee on the objectives of this study. The participant was also informed about voluntary participation in the study and that the refusal to answer any question was feasible at any time. This study allowed the participant to ask questions relevant to the study. Also, if allowed by the participant, the interview would be tape-recorded with assurance that all interview data would be confidentially secured. Interview questions were somewhat transformed into persuading words so that the participants would willingly share and narrate their particular life events. In the stress-free moment, the participants got ready to begin the interview and tell their stories, in as much detail as possible. The participants were motivated to address a special situation that had importance to their life. The interview started with basic questionnaire that covered socio-demographic characteristics of both the caregivers and the care recipients, the nature of the relationship with the care recipients, duration/years of care, daily hours spent in caregiving, information on patients’ illness-related characteristics, and availability of formal and informal social support. Then the probing interview about caregiving experience started with a broad question, such as “Could you please tell me about your experience caring for your older adult?” The follow-up questions involved narrative questions, such as “Could you tell me some specific happenings or a time that can illustrate what you just said? and “Why do you do that a certain duty?”. This permitted the participants to expose caregiving experiences cumulative through their subjective eyes. As Willis (2007) stated, “Phenomenology (is) focused on the subjectivity of reality, continually pointing out the need to understand how humans view themselves and the world around them” (p.53). The researcher also played a role of note taker and observer during the interview. The interviews issued on lived experience of family caregivers were in the frame of the research questions. Specific questions and the question number were not taken into account. The questions fixed to all respondents were as follows: 1) How do you feel?: This question encouraged each participant to narrate their distinctive experiences. The key was to pull out the meaning of being a caregiver as perceived by the participant. All perceptions included everything affecting the caregiver. 2) Why do you do that duty?: This question asked all participants to explicate important motives for taking care of older adults.

[See Appendix C questions to guide the interview]

Data collection during the interviews were possible through a tape recorder and note- taking. Each interview took about 45-60 minutes. Once the data were gathered, and it was transcribed into the script, that would be imported to the Nvivo 8 Software for making codes.

Data Analysis Process The phenomenological assumption emphasized examining the participant’s psychological sphere. It was probably in form of beliefs and perceptions that are made up apparent or suggested

13 by the participant’s respond (Smith & Osborn, 2007). The optimal goal of phenomenological analysis is to try to understand the personal meanings of the family caregivers when handling caregiving experiences. As such, participant’s dialogue is made fractions for learning the life world of participants. There are several methods of phenomenological analysis. This study followed by van Manen’ approach. According to van Manen (1990), thematic aspects of experience can be discovered or separated from participants’ descriptions of the experience by three methods - 1) Holistic approach: the researcher views the text as a whole and tries to capture its meanings; 2) Selective approach: the researcher highlights or pulls out statements or phrases that seem essential to the experience under study; and 3) Detailed approach: The researcher analyzes every sentence. This study began with word-for-word transcriptions of the interviews. All transcribed interviews were organized, reviewed, and entered to Nvivo 8 software. In a careful scan of the first case study, interesting words and significant comments of what the participant said were used to generate the initial themes. After getting familiar with the textual accounts, the next step was to transform initial themes into emerging theme titles in concise phrases intended to catch the critical expressions of what was discovered in the text. To make connections between the emerging themes, the list of them have done and made clusters. The quotes that were significant and relevant to the themes were highlighted and compared to the emerging themes to search for commonalities afterward. In the final stage, a table of themes was constructed to present the transformed meanings and categorized themes. Importantly, this study did analyse the transcript on a non-bias basis. The feelings and previous knowledge of the researcher did not take into consideration. Analysis of the next case started with the emerging themes from the first case. The new emerging themes could be created if eligible and returned to the first case if they were also represented there. The process of the residual cases was similar to the second case. To ensure that there was nothing missing in the significant themes, all transcripts were read and rethought the emerging themes several times.

Credibility A concise strategic plan for this research was done so as to avoid unworthiness. With regard to a phenomenological research, no more than 10 study cases is most suitable (Manen, 1990). A purposive sample size, the family caregivers in rural villages with similar characteristics, was a consideration. Around 6-10 participants used in this study were appropriate for this method (Manen, 1990). The guideline questions used to gather the lived experiences of caregivers were created, with the use of the phenomenological concept. As for the interpretation part, this study seriously avoided the researcher’s biases. Therefore, the researcher mainly paid attention to what the participants expressed. And to ensure the reliability of results, the researcher trusted the methodological triangulation. Besides interviewing, this study used other methods, for instance, observation of participants’ home and community surroundings, participants’ physical responses and their household members.

Ethical Consideration This study was conducted in the out-municipality of Kanchanaburi. The individuals involved in this examination were residing in villages and identified themselves as caregivers. Face-to-face and in-depth interviews about the caregiver’s personal life were research strategies. Approval from the IPSR-Institutional Review Board (IPSR-IRB) was obtained before the

14 initiation of the study. Ethical issues on phenomenological research techniques had placed responsibility on this study before and during conducting investigation. The lived experiences of participants are a phenomenon of interest in which the dignity, rights, safety, and wellbeing of those involved are promoted (Walker, 2007). ‘Sensitive’ topics of inquiry possible to make intrusion into the private sphere had drawn attention. To ask for conducting conversation with the unstructured interview, the participants were well-briefed that their participation in the research would last around one hour and, with their consent, a voice recorder would be used to help accurately record the information they provide. In the event that a family member felt upset during the interview, the researcher would stop the interview. Confidentially and anonymity were a further ethical responsibility of the researcher (McHaffie, 2000). Potential participants were assured that their personal information would be recorded in such a way that no one was able to discern the source. The participants’ profiles were securely kept, using a coding system in the data analysis process in order to protect the individual’s identity.

Chapter 4: Presentation of Findings

Summary of Caregiving Experience This section provides a brief description of the characteristics of each participant’s caregiving experience in Table 2 below.

Table 2: Summary of caregiver’s experience

Type of Name Experience Background relation (Sex, age) Positive Negative Noom Having given around-the-clock care The care receiver - Having pain on the (F, 69) for a husband having Parkinson’s living with her better right arm muscle disease for more than five years, the than living in nursing when carrying the ailment gradually deteriorated physical home in the city frail husband fitness due to senescence and this gave her the feeling to disregard this duty. - Not able to go to Yet she just could not do it because no practice the one else was unable to take this duty dharma at a even her real children which had to monastery make a living with their own family, - Unhappy in a late while a daughter-in-law co-residing life with her had to bring up a newborn baby and a 7-year-old son. Wipa Becoming a household head when her Having an - Unhappy because (F, 62) husband got partially paralyzed, she opportunity to live the care recipient had to prepare meals before going out with husband and hurt her for farm work and came home at noon take good care to - Working harder to see her husband. She often husband with love quarreled with the grudging husband and having more and sometime had to leave home for a debt due to while. Her two adult sons had never treatment expenses Spousal helped her looking after their father, or of care receiver even supported her emotionally and - Unable to get financially. either leisure or relaxed Suda After her husband had leg disability, None - Working harder (F, 65) she became the main earner to support - Not having enough family and had three school-age money to support cousins in her care. Normally, she and family her drunk-husband had unhealthy relationship and both quarreled almost - Neighbors did not every day. She was also very old, but encourage her to had to make money alone just for live with the enough food and necessary things. disabled care receiver Cham Living with a blind wife and a Being with the model - Unable to involve (M, 70) mentally-ill son, he was an only one wife who had been in all community who had to work in his own farm to helped building up a activities, for fear support family members. He felt pity fortune with him, so that let his blind to his wife for not enabling to assist he returned her the herself. best care. wife alone with

Type of Name Experience Background relation (Sex, age) Positive Negative unsafety Chuay Having to look after his wife carefully Always receiving - Unable to involve (M, 79) because of her many chronic illnesses. assistance from adult in some Their children lived and worked children community activity outside, but regularly supported him and their ill mother financially and materially. Boon Caregiving for the very aged parents Delighted to make - Hourly caring of (F, 44) and running her own food shop always repayment to the the day exhausted her. Some of her siblings parent interrupting her denied this caring responsibility for food shop business their old age and chronic diseases. Fortunately, she still had two adult children assisting her business and caring for the care receivers. Jurai When an aged mother had severe ill Being glad to get - None (F, 58) and hospitalized for several days, she closer to her mother Child - had to take close care of her mom. Her and perceiving that parent siblings and children provided money her mother also and things in support for care at home. loved her Lamduan After knowing that her father, who left Being praised by - None (F, 49) her since very young, became alone neighbors as a filial and depressed, she then had to take child him home. Their relationships seemed to be bad, but she still took daily- care for her father very well because she did not want to get blamed by other people. Lawan Sympathized to a quadriplegic care Proud to assist the - Feeling upset about (F, 60) receiver, she quit her paid job to do care receiver to gossip from all-day-long caregiving for her continue his life neighbors and care husband’s friend. Her children and receiver’s relatives husband greatly supported her devotion. that she needed the care receiver’s Non-blood properties. related - Having muscle pains over body Kaew Moving into husband’s house after Pleased to ease some - Feeling indifferent (F, 31) marrying, she had to take care of her of her husband’s along with having aged father-in-law. She hardly talked burden additional tasks and with the care receiver. The only one raising her two reason of giving care was to help her husband who worked in farm. school-age sons

Emerging Themes There were many emerging themes filtered by the many themes emerged from the analysis of participants interview transcripts. The statements from different participants mentioned several times were grouped as key themes. These main themes were presented under each open-ended question for the participant. Question 1: How do you feel about being a family caregiver? Question 2: Why do you do that duty?

Feelings of Being a Family Caregiver Responses to this question –“How do you feel?”- produced variable themes, namely: 1) changing in life path; 2) suffering alone; 3) double trouble; 4) disheartenment; and 5) need for freedom.

Figure 3: A summary of what it feels like to be a family caregiver?

Changing in life path

Need for Suffering freedom alone Feelings of being family caregiver

Disheart- Double enment trouble

Theme 1: Changing in life path When describing “the feeling about being a family caregiver”, participants informed of the changed life evidently. Changing in life path, possibly, represented unsatisfied experience during taking care for a disable older adult. To participants, the pleasant day of caregiving had never been attained. Day-to-day activities appeared to upturn during the time that less and less interaction between caregivers and care receivers stepped in. The caregivers were playing two roles. One role was an act of his/her own life, another role was for the care recipient’s life. In fact, family caregivers made every decisions on behalf of their care receivers on eating, toileting, body cleaning, sleeping, etc. In terms of social engagement, both left themselves off all social interaction. The caregivers responded that they could no longer go anywhere and rarely involved in almost all community activities. The main reason concerned the desire not to leave care receivers alone at home. Interestingly, on the falling-ill older adult’s side, sociality turned diminished. Caregivers stated that the neighbors who had ever made regular visits hardly came to visit ever since.

When elderly caring popping up, almost all participants had their life changed. Some caregivers quit their monthly-paid job for the 24-hour-care for the paralyzed older adults. This caused the loss of monthly income to the caregiver.

I cannot go anywhere and have not done any job since he has been unable to help himself. I want to stay comfortably at my home and get a paid job. If I had worked at a resort, I would have earned a 10,000-20,000 baht a month, I would not have to do housework like this. ...I used to ask his relatives to take him back, and then I would definitely do my previous job, but they said No abruptly. Lawan (female, 60, friend)

Life of caregivers who were wives had changed entirely when the household leaders were unable to make a living. It was not only a worry about greater household responsibilities, but growing aging and other troubles moreover. Two participants taking care of the frail aged husband expressed the stresses regarding the changed life. Mostly, female caregivers uttered the impacts of being family caregivers, while two male caregivers said indifferently.

A doctor said that my husband was paralyzed, I then cried out very loudly, because there no one would make a living. ….Every noon I have to home in a hurry to see him, I am afraid he would fall. … I cannot go anywhere and do anything but looking after him like this. Sometimes, I have no money at all, I get so stressed. …Everyday, I get up at four a.m., cooking, doing laundry, dish washing, house-cleaning, and preparing for work. I come back at noon to take care of him, have lunch and then go back to work. Even though I get sick, I still have to do all the same things as ever. Wipa (female, 62, wife)

In earlier days, he was able to work, it was alright, and there was another person to help make a living. Now I am the only one working for money, I am so stressed. Suda, female, 65, wife

For the caregivers who were still on their works, they needed to make a balance their life according to the routine job and caring-works. The caregiver looking after the aged parent was trying to balance out the work and care. Sometimes, the paid job turned to be the first priority.

In the morning, I change a diaper, wash her face, feed and give her medicines, and walk her to bed. After that, I just have time to prepare food for service. At midday, I have to do as same as in the morning. Sometimes, she calls me to change a diaper but I have to tell her to wait for a while because I have to service clients first. Boon, female, 44, daughter

Theme 2: Suffering alone Coping with changing life events brought about a stress-suffering to participants. As for physical burden, they experienced an unaccompanied burden when giving care. Nearly all participants instanced a physical strain from unavoidable tasks, or daily household routines caregivers had to do. Mostly, caregivers expressed that they were the only one able to work inside and outside the house. Other family members lived in the same house, but none just could deal with elderly care. Reasons for this were that, they worked elsewhere, they were the young children, or they also had congenital diseases. Furthermore, the caregivers articulated this responsibility a non-holiday task although they were unwell. With regard to poor health, female caregivers suffered from muscle pains because of lifting or carrying the patient unable to walk. Emotional distress occurred when the caregivers coped with the unstable mood of care recipients. These negative sensations incorporated anxiety, irritation, fear, desolation, sorrow, hopelessness, and unhappiness. Albeit, encouragement was essential for boosting up strong mind, the caregivers never gained it from people around. A female caregiver felt disappointed when hearing the gossip about her and the care recipient on liaison. Some neighbors even instigated the caregiver to abandon the disabled older adult in care. Economic distress was the major cause of continuing working for income among caregivers. Some gained financial support from family members and adult children. Nonetheless, some caregivers did not, realizing how much responsible their children were for their own family. This was, perhaps, an acceptable reason of financial strain. The following specific cases illustrated family caregivers’ suffering. Lawan experienced physical strain since she had to carry the male care recipient whose body was much bigger than her. Widely known, the elderly frequently behaved childishly. Therefore, health-problems might activate annoying and childish acts in old adults.

Every morning, I carry him out of the bed to sit here. At first, I could not do it alone; I got helped from my youngest son. Now he is working outside early morning, I told myself I must be able to do it. …Sometime I am so stressed. I have nowhere to take him to, his relatives deny caring. …Sometime he is self- willed. Once I was feeding him a spoon of noodle, he just blew it out to my face. He is very stubborn, always yelling at and hurting me. Lawan, female, 60, friend

About Wipa, her partial paralyzed husband often got terribly moody and hurt her body when she came back from farm work in the evening.

Sometimes, I get angry with him. Despite everything I’ve done for him, he hurts me. Every night I think I feel like to commit suicide, but also I think that there are still the people who are poorer than me. Wipa, female, 62, wife

Likewise, Suda often had a fight with her alcoholic husband. It was extremely hard for her to take good care of the disabled husband.

Previously, he drank alcohol and as soon he got drunk, he then bawled me out and chased me because he owns this house. …I don’t have enough money for all, I

earn money alone, and there are three children. Now I am working alone, I am very stressful. I will never see him recovering to work again. Suda, female, 65, wife

In case of Noom, she was also in old age and had arm pains when holding. Her children living nearby did not help her because of their work. She had much stress and easily became fatigued doing caregiving alone in her late life.

If he can’t walk, he won’t take a bath. I beg him and try every ways to let him do. Getting hurt, I have to bear although. Sometimes I mutter, sometimes I get angry. Noom, Female, 69, wife

The familial system in rural areas have been strongly maintained, married siblings living next door can help each other. In the situation that the number of older adult is on an increase, siblings become the elderly who also need caregivers. The youngest one becomes a family caregiver caring for the aged parents. Being burdened with caring the elderly father and mother is challenging the working-age caregivers. Boon case can exemplify. Her elder sister was 60 with congenital diseases and received an operation recently. This sister simply could not play a caregiver’s role.

Sometimes, I also feel cramped when I stay alone. Notwithstanding I have siblings but they cannot help me. Boon, female, 44, daughter

For Kaew case, she is in the middle age, raising school-age children. She stated the pessimistic experience in caring for the aged parent.

People who have never been a daughter-in-law would never know how much such a feeling is. The one who is the daughter-in-law needing not to take care of the elderly would have said nothing. Kaew, female, 31, daughter-in-law

Lawan case indicates that caring for the non-relative elderly seems to be an act of taking advantage on the care recipient. Moreover, caring for the elderly of different sex is viewed as committing adultery. And, absolutely, discouraged words from outsiders give the caregiver a deep sorrow.

His relative said that I was his adulterer, I said to them abruptly that I was a human not a fighting-fish, I was educated, …I also to them that if they were like me and was accused like this, how did they feel? Lawan, female, 60, friend

Theme 3: Double trouble This theme refers to the caregiver’s suffering from several problems. Some of caregivers faced an additional domestic problem, especially about their children. Some caregivers, although having neither family problems nor health problems, and their love ones become an obstacle to living. As abovementioned, suffering alone pointed that no one was able to ease the workload. For double trouble, the caregivers had more sufferings, comparing to the life prior to being the family caregivers. Besides caring responsibilities for vulnerable older adults, caregivers had various family problems rushing in, such as insufficient income to buy some food, to invest in farm, and to raise children. Moreover, the unpleasant behaviors of adult children further added stress to the caregivers. Health problems of both caregivers and family members resulted in a double increase in caregiving duty. Nonetheless, not all caregivers experienced financial problems in caring for their dependent older adults. A few carers received some financial supports from their children. Regarding the wife-caregivers taking care of weak husbands, these wives appeared to bear the suffering more than others. The certain cases illustrated this theme as the followings. The experience of Wipa, her adult child’s evil behaviors made her worry. Being a mother, she could not deny helping this son although she had never gained any financial assistance from him. Also she had never asked for it, knowing well that his life had been in trouble.

I sleep crying at night, feeling less happy and more sorrowful. I am worrying about my child. He makes friend with bad guys, and was arrested. He ignores his child and wife, I shoulder a burden, getting a loan in order to look after them. Wipa, female, 62, wife

To Lamduan, her extended family had a warm relationship. Her younger sister, adult niece, and husband were the main income seekers. However, the health of the very old mother, her husband, and herself turned to be a worrisome problem that required money for treatments at the same as money for her children in school years.

It is not sufficient though, it is still alright because I can help my husband earning money occasionally. If I work in a chili plant farm, I will receive some wages for daily foods. ...My husband is not in a good health, he has got dyslipidemia. And there is sometimes to worry about my mother’s health because she has often got fainted. … Thinking about this, I do not go for work, and then my husband is not well and my younger sister takes responsibility on household expenses alone, treating the aged parents, cousins, and her children. Just one person makes a living, earning 200 baht a day, is it enough? And also three children have to go school every day. Lamduan, female, 49, daughter

Suda case shows a bad relationship with the husband and this represents the major problem to her. The second problem was associated with insufficient money for household

22 expenses. Like other caregivers, taking responsibility for young cousins was a great burden in her old age.

Taking care of husband wears me out and gives me stress. It is not enough for living, I am the only one breadwinner, and have to buy pills for him, have to look after the young cousins left by their parents. Now I have many stressful things, got tired from working, moneyless. Most of expenses are paid for the young cousins, so this is the heavier burden than living with my husband alone. Suda, female, 65, wife

For the male caregivers, there is no expression on the difficult problem in caregiving to their care receivers.

Theme 4: Disheartenment Encouragement helps the suffered caregivers be steadfast in imperative obligation. Every supports to family caregiver – financial, emotional and material – is valuable. Controversially, material support is not as mind-hurt much as disparaging words. There are several disheartenments making most participants feel that the caregiving experience is miserable. When some people say to a caregiver why he/she has to take care of such an older adult or say something in negative way, this discourages the caregiver. For instance, a family caregiver was accused as an adulterer of a disabled male older adult, or giving cares as for the bequest of the care recipient. In some cases, the family caregivers are hurt mentally and physically by care recipients such as hitting, rebuking and so on. Additionally, the symptom developing worse toward the senile older adults causes the caregivers in despair. An illustration of disheartenment expressed by the female caregivers is presented below. Lawan revealed her deep feeling when hearing an uncreative word. This damaged her good intention to care for the disabled older adult. Except family’s encouragement, she had never touched sympathetic words from neighbors.

When whoever says that I feed him because I want his bequest, it makes me downhearted. Some people took pity on me, asking that he was not my relative and why I had to take care of him or whether I wanted his properties. Lawan, female, 60, friend

Wipa gave care for her weak husband with affection and sympathy. She understood well the nature of chronic patient that terrible mood and stress often occurred. She had tried to avoid fighting to this self-willed husband, never thinking of leaving him off. Her siblings and friends incited her to leave the moody husband, but none of their attempts successfully influenced her to do so. Nevertheless, she always cried at night and sometime thought of committing suicide.

Right after my husband had got sick like this, neighbors have never paid us a visit although they had ever borrowed our belongings before. …my siblings also tell me off for doing like this despite he (husband) hits me. If we have talked to each other normally, it would be all right and I would have not got stressed. If he had not scolded me, I would have been

happy. I am tired from work, and would like him to talk to me nicely. Whenever he is frantic, I will go outside, and come back when his temper cools down. Wipa, female, 62, wife

In the case of Suda, her neighbors often saw the quarrels between Suda and her husband. Perceiving that Suda was very hard-working and her husband was unable to do so but drinking, their neighbors told her to desert the frail husband. This once led Suda to chase her husband away.

A neighbor ever said that he would have died soon because of over drinking. Let him die. I said that I was going to die before him, because I had to find food every day. I was very tired, almost got deadly shocked. He has never done anything at all. Suda, female, 65, wife

Theme 5: Need for freedom The need of freedom is the one of the frequent appeared themes that most caregivers conveyed, especially female caregivers. The freedom here is meant the family caregivers want to fade themselves out of taking care of older adults. Exceptional for male-aged participants, nearly all woman caregivers desired to be free from such an endlessly obligation and the take-over of this responsibility by someone else. Some participants would like to regain the work for income generation, whilst some needed a rest and peace in the later life or some preferred to live alone without human burden. The elderly-caregiving experience turned out to be undoubtedly negative perspectives among family caregivers. In reality, it was impossible that caregivers would abandon their frail older adults. The hereunder expression demonstrates this theme. To Lawan, she wanted to work more than giving care on condition that having a choice. Albeit the ownership of land and house after the care recipient’s death, she was not much interested in such offer. She carried on caring responsibilities because of her husband’s request and her sympathetic feeling for this care recipient.

I want to stay comfortably at my house and get a salary job. Lawan, female, 60, friend

To Noom, she was very old and unhealthy like typical elderly. In her late life, she needed to take a rest and have a peaceful life. So, taking over this obligation by her adult children was her desire.

Tired, bored, I want my children to play a role in taking care; I want to get away from this duty right now. If there had been two assistants, it would have been so great. My most wanted happiness is a stay in a monastery. Noom, female, 69, wife

In case of Wipa, being chased and hurt regularly by the aged husband, she had to leave her house for a while, and then return after her husband calmed himself down.

When fighting, he chases and hits me; I think I would rather live alone. Wipa, female, 65, wife

To Keaw, her responsibilities of a wife and a two-child mother made her feel that caregiving was a burden, particularly by the non-biological father. She felt no bond between the husband’s father and herself despite nearly ten years of being a daughter-in-law.

I used to think I would like to take care of him for just five years, and imagined that other persons would take this responsibility. In fact, it is impossible, he lives here and there is no way that he would go away. My life might have been happy if I had not taken care of father and mother- in-law. Kaew, female, 31, daughter-in-law

Suda case indicates that previous and current behavior of her husband do not dissuade her from looking after him. Her job was to earn money and buy food. Her dependent husband, in late life, had never got well-treated by his wife or children.

I ever said to him that I did not want him. I would like to run away from him. I wanted him back to his hometown in a northeastern province where his siblings living. I was lazy to make a living for him. But he didn’t go away, doubtfully, he might have loved me. …I once hired him to return to his old home, but shortly after, he came back. Suda, female, 65, wife

In summary, five emerging themes illustrate the negative feelings of family caregivers dealing with care for the disabled older adults. Apparently, the participants experienced suffering. Altogether, this study tried to find out the positive emotions; unfortunately none were found in common expressions.

Justification of Taking Care Responses to the question “why do you do that duty” produced meaningfully essential themes in explaining the reasons for being the primary caregivers at home. Four emerging themes lied within the stories of each participant. Those themes are: 6) compassion; 7) moral responsibility; 8) commitment; and 9) belief in the law of karma

Figure 4 : A summary of the justification for providing care

Compassi on

Belief in Justification of Moral the law of responsibi- taking care karmer lity

Commit- ment

Theme 6: Compassion The compassion is associated with the feeling of the caregivers toward the elder persons in their care. Compassion is identical to fondness, and attachment, and pity. Emerging from this study, two categories of compassion are: 1) Compassion originated from love and bonding 2) Compassion without love and bonding

Participants’ expression revealed an incongruity of this sensation. Fondness and attachment bring about intentionally care. For instance, the husband-caregivers did caring for the dependent wife with compassion because the wife had been a good housewife. Similarly, child- caregivers gave care to aged parents with attention because of love and bonding, including love and care in return. Another viewpoint regarding the compassion theme is feeling of pity, without love and respect. Some participants, namely a daughter-in-law, a wife and a daughter left by her father, confirmed that elderly-caregiving was an inevitable liability. In relation to the attention to care, compassion with love and bonding is different from compassion without love and boding. The former is accompanied by all best practices while the latter occurs with ordinary practices. Compassion is a primary reason for the caregivers to continue taking care. All practices treated to older adults mostly come from sympathetic or pitying sense. In some cases, compassion is a unique meaning with affection. Compassion in some cases associates with the meaning of kindness without love. The following expressions of each participant communicate the reason for caregiving. In Lawan’s experience, her care recipient was a friend who had a close relationship with her family since they were in middle age. 24-hour care for the weak old man was reasoned by a sympathetic sense. She perceived that his sibling were unable to give him cares because they were also very old. The man in her care did not have his own family; Lawan hence had to treat him with all best cares like he was a relative.

As soon as he became like this, I let him to hospital. His brother shortly visited him and gave me 1,000-2,000 baht and then departed without attention to patient. ....For him, he often said he wanted to die, did not want to be a burden, and then I said encouragingly to him. …I would like him eat good food, take a bath…. Lawan, female, 60, friend

In Noom’s story, she was almost 70s and had a weak right-arm. She used to send her aging husband to her son’s home in other province where a caregiver was hired. Later she found that such the caregiver did not much pay attention to the care and so she had to take her husband back home. She took pity on him for not getting a good treat.

He was once taken to our son’s house in other province to be cared by a hired caregiver. After a half month passed, I had to take him back. I could not bear seeing like this. Because the caregiver did not attend to him, whether he ate or not. She did not pay attention as much as I did. Noom, female, 69, wife

About the story of Wipa, she and her husband had lived together, relying on each other until her husband got paralyzed. She loved her husband a lot because of his love for herself and children, hard-working nature and resistance to all vices. He tried to help her by carrying a farm tool, but then he fell down in just a minute. She tried all her best to get him the remedy, seeing both modern and traditional doctors. Her sympathy for him grew intense because their two sons had never asked about him and his friends never visited him.

My brother said to me why I still worried about him despite he hurt me. Why not worry? I feel pity on him. I have to restrain my mind. My friend said I should go away from him. I replied back I could not do that. Sometimes, he was in good mood, he cried out, saying he put me in trouble, and then I felt so pity on him. …I am afraid he would fall or die. Wipa, female, 62, wife

Jurai’s reason for taking care of her mother concerned the view that no one could treat the parents as good as their children.

I don’t want my mom to stay in hospital. There, I saw a nurse scolding an elderly for messing up when toileting like that elderly was not her relative. I had sympathy for the elderly. This is my mom, I just cannot leave her. Jurai, female, 58, daughter

As for Lumduan, she had to take her father back even after being abandoned for 30 years. Her father’s present wife just passed away and the son born to this wife left him alone at home.

His second-wife’s son has never phoned him, I am in doubt when he (dad) is looking straight to the road, and he may imagine that his son is coming. Sometimes, I see this and have pity for him. Lamduam, female, 49, daughter

To Suda, a connection between her and husband look unhealthy. However, she just could not ignore him. Realizing that he could neither take a long walk nor make a living, she carried out all household head’s duties. They lived separately under the same roof.

Having him close to me, I won’t be lonely, though. … I would have been happier and more comfortable than now, I could have gone everywhere happily. Indeed, I cannot go anywhere because I worry about him. … We don’t have a happy relationship, I accept that previously I loved him, but now I don’t. Suda, female, 65, wife

In case of Chuay, a long and warm relationship between him and his wife was reasonable.

I am worried about her, because she cannot live alone, especially at night. Chauy, male, 79, husband

Theme 7: Moral responsibility Moral responsibility is relevant to the appraisal or blame for responsibility of a person. In other word, people try to do the right thing to avoid a blame, and to get an admiration. In some cases, people do good things because they feel proud of themselves, and feel ashamed for doing bad things. Mentioning about the elderly or aged parent caregiving, many family caregivers hold this responsibility in order to avoid accusation from people. The caregivers in this study stated that if they did not treat the elderly well, the elderly’s health would worsen. Possibly, people would accuse them of the elderly’s worsen health. Some participants took care of dependent husbands because they were a father of their children. Some reasoned this was because of the word “spouse”, and “biological parent of the child”. These significant findings were behind the moral consideration to be caregivers for their family members. Caregivers reported the necessity of caring relevant to humanity. Lawan had never had an idea of leaving her dependent friend alone at home. The best cares she could provide to him was not a repayment of his offer of properties. It was merely a humanitarian reason that backed up her decision. She would be guilty of leaving him dead.

Well, I feel bored; I want to leave him but I just can’t. If I do not care of him, who else will do it. There’s nobody he knows here. … If something happens to him, ones will think that I don’t give him a good care and I let him die. Lawan, female, 60, friend

As an adult child, Lamduan could not ignore her depressive father. Socially concerning, she did not want to be blamed by people in regard to filial piety.

It is because of social obligation, where I can leave him? Even though I will not do this, my sister has to take this duty. So we have to help each other until he dies. …Truly, I have ever felt down that he had never looked after me when I was young. Now he is not able to help himself, so I have to look after him, because of the word “father”. Unless I do care for him, I am afraid I will be blamed by others that he has many children but nobody can care for one father. ...But, comparatively, the willingness to care for him is lesser than for my mom. It’s we quite have lots of disagreements. Lamduan, female, 49, daughter

Kaew lived nearest to the frail elderly’s house. When father-in-law fell sick, she had to help care for her husband’s father. This duty was inevitable in spite of the fact that she and the father-in-law had an unfamiliar relationship. However, she thought that, at least, it was an act of assistance to her husband.

My husband often says that if we do not do it, who else will? Kaew, female, 31, daughter-in-law

Theme 8: Commitment The universal requirement of caregiving is a promise to the care recipient. This theme illustrates another explanation why caregivers continue to provide care to dependent older adults. Commitment implies a guarantee of care for the long period. Meaningfully, it is similar to a mutual promise to spend life together that both caregiver and care recipient will repay to each other. Just like a female-friend caregiver taking care of the paralyzed care recipient, her one major explanation is to do as good as her words, that once the care recipient also had said the same for her family before having paralysis. Happening later, the care recipient’s sibling offered her his assets if she gave care for him until his death. Some participants were assigned by family members to take care of the elderly relative in the same household. This reveals the job distribution in household. One is the breadwinner to support household members while others take charge of around the clock caregiving. Lawan said about her caregiving that, it came from the request of care recipient previously. And her family members agreed with 24-hour-care. Being offered with properties such as land and house, this was definitely not her requirement. She had already had her own properties.

Once he had got sickness, he had called me and then asked if I could look after or do everything for him until he died, I told I would. …. His siblings said that if I looked after him, they would put my name in his will if he died. … It is my duty. Lawan, female, 60, friend

Cham made the caregiving for his wife as the responsible and required sense. Even though, Cham did not give the reason for caretaking directly, his expression implied a husband responsibility.

We had struggled for living the start of our family and raised children together. She was a good wife and managed everything perfectly. I do caring for her because of love. Sometimes I feel discouraged, but I have to fight off, because she told that never left her life. …I had once a severe hurt on my leg, it was very painful. At that time, her eyesight was good; she cleaned my wound and took care of me. Cham, male, 70, husband

Theme 9: Belief in the law of karma Almost all participants insisted that giving care to the elderly was a fate. This has a connection with the Buddhist belief of Karma. The participants believed in the law of karma and reincarnation in particular. Regarding the law of karma, this presents the fate of both caregiver and care receiver resulted from actions in the past life. Family caregivers accepted the duty to take care of their older adults with disability at present because they had been treated the same in the previous life. So, caregiving in this life returns to the care receivers. Some caregivers also believed that caregiving at present were the repayment of bad things they had done to their care recipients in the past. Hence, these caregivers had to accept the great hardship in the present. In addition, some participants offered cares to the elderly for the belief that they would receive the same offers from their children in the future. Believing in rebirth, the caregivers stated that they performed good deeds at the present for the betterment in their next life. They asserted that being family caregiver was a direful destiny including being older adults with disability. The hereunder stories reveal Buddhist belief and fate. Lawan’s thought confirmed that her uneasy life in the present derived from the previous- life deed.

I ever thought that I might have done a lot of sins in my previous life, so I had to care for him in this life. …If he dies, I would just realize the impermanency of all things. Lawan, female, 60, friend

Noom reflected how mutual debts between her and husband were. Caregiving for her husband meant a compensation of invisible debts.

My children said that mom was in debt to dad, mom does repay him. …It is like this, depending on our fate. Noom, female, 69, wife

Jurai mentioned that being a giver at this time would turn her to be the receiver later.

A neighbor told me that it was good that I were taking care of my mom – who was a benefactor. It was to gain merit. …I said to my child, “Look at your grandma, I will be like this if it’s time”. Jurai, Female, 59, daughter

Kaew, as a daughter-in-law with two sons, completely believed that she would receive cares from her future daughters-in-law.

There exists fate. A little more time we get advanced in life, we have merely sons and future daughters-in-law may take care of us. Keaw, female, 31, daughter-in-law

Cham though that he and his wife possibly did sins together in the previous life. Hence, both had to encounter the troublesome situations at present.

I think it is our fate. In the previous life, we might have done bad things to someone that we had never knew. But, at this time the fate comes chasing us, we have to accept it. Cham, male, 70, husband

[See Appendix 1 the stories of family caregivers]

Chapter 5: Discussions and Conclusion

Elderly-caregiving Experience This section provides a summary of the experiences of family caregivers classified by the type of relationship: spousal, parent-child, and non-blood relationships.

Spousal Relationship. Five participants were giving care to their disable spouse in old age. In most cases, their adult children did not give much help because they worked in urban and other localities and their adult children who lived nearby were burdened with their own families and very young children. The wives caring for the senile husbands expressed negative views on their caregiving duties, mainly owing to their spouse’s reduced physical capacity and aged- related diseases. These female caregivers suffered when carrying or moving their husband’s feeble body. One wife who had a bad relationship with her husband felt like to leave him off, but was unable to do so because they had three young cousins living with them. Most caregiving wives refused to reveal straightforwardly that they did it because of affection. Two out of three wives desired to practice the dharma in a near monastery. Two husbands revealed that they took care of their frail wives because they were in good health and they were reciprocating to their wives. They had even been asked by neighbors about finding a new wife. The answers went to the feeling of sympathy toward the sick and the same care by their wives would be given. Caring for aged spouse is the contemporary trend in Thai society. Regularly it is seen in remote areas where their adult children resides in other province to work. Aged parents do not want to leave their own house to live with offspring. They hope their children have income from work and support necessary resources including money on a monthly basis, and frequent phone calls instead. It is possibly that he/she will move to his/her adult child’ house lastly if his/her spouse were dead for he/she might have estimated that living alone is unsecured for late life.

Parent-child Relationship. There were three daughters taking care of their aged parents. These daughters provided care for the main reason, “who else would do it if not them”. One respondent reported that her sibling who was very old together. Some of them had to take care of their aged husbands, some of whom had health problems of their own (e.g., a recent kidney operation). Consequently, this respondent had to look after the very old parents without the assistance of her sibling. This caregiver had her own business and so without financial difficulty she could provide care to her aged mother and hiring a local person to look after her aged father. Another respondent said that she volunteered to care for her mother because she was jobless. However, her sibling who lived in another area supported her financially and provided other necessary resources. The respondent who was giving care to her depressed father said that she felt sympathy for him since his children born to the second wife abandoned him. Despite a distant relationship for more than 30 years because of being left with her birth mother, she needed to provide care because she feared being blamed and she feel obligated to him because he was her birth father. Providing care for aged parents is regarded as the duty of children. The caregivers will be admired as a filial child, whilst who ignores elderly parents is labelled as an ingrate child. Thinking back to their childhood years and what their parents did for them, children will be gratified to do such a filial duty, so their parents will be proud of them.

Non-blood Relationship. Two female respondents were non-blood related caregivers. The first one took care of her husband’s friend, with whom she was very familiar. She was once asked by this paralyzed friend if she would care for him if he was not self-reliant. She said she would and she became the caregiver when the time came. Her husband and children encouraged her caregiving duty and supported all care-related expenses. She quit a routine job so as to take care of the disabled friend, as if he were her own relative. Despite all of her caregiving, which cleaning his body, she expected nothing in return despite the fact that she would inherit properties from the care receiver’s death. The second caregiver was a daughter-in-law, saying that she and her father-in-law rarely conversed and what she did was serve him meals and medicines. The care receiver also never asked help from her. Her husband was a major earner, and did not have time off to help with caregiving. Care duties fell upon her undeniably. Her relatives also supported it, reasoning that eventually her family could make a living on his farmable land.

Phenomenological Description This study investigated the lived experience of family caregivers looking after older adults in rural villages. It applied a phenomenological method with the use of story-telling from ten participants about giving in-home elderly care. The five major themes emerging from the responses of the open-end Question 1 were titled the category one “Feelings of being a family caregiver”, and Question 2 titled the category two “Justifications for providing care”.

Feelings of Being a Family Caregiver. The finding of this study revealed five essential themes of caregivers’ feelings that arise over time. To begin with an expression of change in life path, six out of ten caregivers said their lives were “not the same as before”. Elder care affects employment; some participants quit a job for full-time caregiving, some spousal caregivers became enemies of each and some became non-sociable persons. The present finding also support Bursack (n.d.), which concluded that caregivers’ lives has been changed in a combination of positive and negative ways. When it is time for long-term caregiving, all persons try to balance out their own life regardless of the disturbance, which was consistent with Barrett (2013). Mintz (1993) found that the unexpected rise of illness or disability in a family member is probable that the role of caregiver altered and has additional tasks, the caregiver needs to change oneself role which is in good agreement with the results of this study. Becoming a family caregiver means taking responsibility on dual lives – both the caregiver’s own and that of the care-recipient. Family caregiving means devoting time to assist another person without the requirement of return. Some caregivers did find enjoyment to do care for the dependent elderly. Caregivers is happy when care recipients say something about impression in receiving good care, is encouraged by praises of other people. In fact, caregiving to weak elderly person causes the family caregiver a cycle of troubles. Each caregiver is the only one person obliged to care for the weak elder, assisting with daily-routines, doing housework for other dependent family members, and making a living to meet household expenses. Caregivers encounter these challenges alone, in addition to coping with ill temper of care recipients. These caregivers seek several methods to manage the care recipients, who often exhibit behavior problems and resist care. For female caregiving spouses particularly, the care grows with respect to the effort it requires, especially in times of financial strain. Shouldering physical, emotional, and financial strains alone is interpreted as suffering alone. Suffering occurs during the process of being a family caregiver. This is similar to Pereira and Botelho (2011), who found that

‘feeling alone’ is multidimensional. It can reflect being physically ignored, losing the ever-being world, and missing who the person was prior to being sick. There are diverse obligations distinct from caregiving that caregivers have to overcome. In Thailand’s rural areas, low economic status is a major problem that causes people’s limited accessibility to educational opportunity, proper health care, equally distributed recourses, and so on. The consequences of poverty affect the quality of life of rural families. Health problems of caregivers and/or family members cause additional burdens, as can treatments and unemployment. Unpleasant behaviors of children also impact upon the mental condition of the family caregiver who is also the household leader. Caregivers in this study encountered numerous problems, from spousal conflict, adult children’s misbehaviors and chronic illnesses of other family member and debt or economic strain. Declining physical and mental health comes with worrisome feeling. These complicated familial problems are interpreted as double trouble. This study reflects the finding of DeGeorge (2011) that depression, losing friends, feeling fury, finding fault, and additional financial strain place stress on caregivers. Many family caregivers are discouraged by familiar friends and neighbors who do not acknowledge their caregiving efforts. This is the most critical factor that resulted in negative feelings for family caregivers. This study reported that many caregivers did not receive any kind of praise from other persons. This feeling of dispirit reflects the finding of Schultz and Sherwood (2008) and Davis, Gilliss, and Harper (2011) that mental health well-being reported extensively in the literature on family caregivers which are depression, anger, fear, discouragement, isolation, and overloading occur over the time of being a family caregiver. Many research studies recommended social support is important to family caregivers in gainning quality of life (Otis-Green & Juarez, 2012). Based on this study’s findings, communites and companions gave no support, but discouraged caregivers. The caregiver of the sick elder person was critized as the beneficiary of the care recipient’s properties. Sometimes caregiving for a male-friend was viewed as love affair. Other caregivers were encouraged by their friends to desert their disabled spouses. Some people even incited the male caregiver to find a new wife. The feeling liked the lack of mental support from people portrays the disheartenment. Most female caregivers demonstrated feelings of unhappiness, tiredness, physiological and psychological suffering, and isolation. These combined feelings signified the need for freedom from the responsibility. The aged female spousal caregiver would like to spend a later life at a monastery whereas the middle-aged female caregiver preferred to hand over this task to other family members so as to help her husband making a living. Conversely, two elder-male caregivers caring their spouses said nothing about braking that duty.

Justifications for Providing Care. The findings of this study disclose the reasons why the caregivers continued to look after their elder persons. Initially, the family caregiver feels pity for the care receiver who is unable to help him/herself. Compassion was a reason for caregiving. Pity is similar to compassion, which means ‘a feeling of sorrow that inclines one to help or to show mercy’. When people take pity on an event in or aspect of someone’s life, that event or aspect is bad (Starr, 2001). Originally, compassion is used in practice of religiosity (Straughair, 2012). In Buddhist psychology, compassion is a ‘form of empathy’; feeling the pain of another as the same oneself, desires suffering one relieves from it (Makransky, 2012). In nursing, compassion refers to an individual practice to treat human beings with esteem, kindness, and consideration (Straughair, 2012). In the present study, family caregivers showed compassion to the feeble elderly in two ways. First, pity and consideration stand between the family caregivers

34 and their older people. This kind of compassion is not an attachment such as the case of a female friend giving care to a paralyzed elder. Another explanation of compassion existed between a daughter and a father who abandoned her when she was young. The daughter showed mercy, rather than close off the relationship between father and child. Second, a sense of compassion is associated with attachment. For example, the husbands looked after their unhealthy wives. In Thai society, compassion or Metta is a practice in Buddhist dogma. So believing in religious doctrine can help a caregiver feel pleasant. Aside from compassionate caring, moral responsibility is also a common motivation behind caregiving. Several definitions refer to moral responsibility. Kenton Machina (2007) explained that generally, an action of person is held with responsibility, they will deserve praise of blame for their duty. People who are morally responsible would be shamefaced for doing something bad or not doing something helpful for another person. Moral responsibility in caregiving is a reciprocal presentment with kindred sense (Kleinman, 2012). This study reflected one reason for caregiving, the avoidance of accusation of abandonment. A daughter gave care to her father because of the word “father”. In Thai society, children feel obliged to look after their parents even though the parents may not have raised them. This biological bonding simplifies moral responsibility to give care to aging parents. Another example is the case of a female friend taking care of a male friend. The woman would feel guilty if she treated him badly, resulting in his death. Moral responsibility interpreted as people are morally obligated to lend a hand to weaklings. Commitment refers to ‘the state or quality of being dedicated to a cause, activity, etc.’ in the Oxford Dictionary (http://www.oxforddictionaries.com). In the Merriam Webster Dictionary (http://www.merriam-webster.com), it means ‘a promise to be loyal to someone or something’. In many studies on caregivers’ experiences, commitment symbolized the strong bond to an older adult who is the beloved, similar to ‘filial obligation’. The caregiver aspires to repay the material and emotional things received from the care recipient, the present finding agree relatively well with that from Connell (2003). Commitment means to bear the responsibility of caregiving and care receiver’ life with supportive manifestation and self-affirming loving connection with the care receiver (Williams, 2005). Commitment in this study occurred to the spousal caregivers, specifically the husbands caring for their disabled wives because of affection and promise. Caregiving for dependent older adults in Thai society is perceived as an element of Buddhism with respect to the law of karma. This perception has three aspects. First, Thai family caregivers believe in rebirth. The reason for caregiving to older adults in a present life is that the caregiver will be an older adult who is given care in the late life. Second, the caregivers assume that they had done bad things to older adults in their previous lives. Hence, in this current life, these caregivers have to compensate with good actions to the aged parents. Finally, the caregivers believe in future benefits, that they will receive caregiving similar to the care they provide for the frail older adults. Strong belief in the law of karma obviously family caregiving in Thai society; helping other people will gain merit that brings positive consequences (Sethabouppha, 2002).

Social Exchange Theory Discussions As raised in the review literature chapter, social exchange theory (SET) is one practical concept in explaining the behavior related to elderly caregiving in a reciprocity perspective. To illustrate the social exchange theory by all appearances, the following studied cases provide explanation.

Reciprocity in the Dimension on Spousal Relationship. Reciprocity in caregiving of spouses is not relied entirely on gratitude aspect but the benefit. The spouse takes up well-care to the frail aged spouse due to compensate him/her being a good husband or wife during the previous life. As seen by Cham and Chuay, affection and attention were behind the good care given to their wives who, earlier in their marriages, had carried out the expected wifely duties perfectly. To the caregiving husband, it would be shameful to neglect her and find a new partner. In contrast, poor quality care was practiced by the couple who had a long-time bad relationship. Suda, hurt physically and mentally by her husband in the past, thought it an unfortunate life to be giving him care. She merely provided him with fundamental necessities, not mental care or moral support. She still lived under the same roof with her dependent husband, albeit she desired to get him out of the house, but would not do so the sole reason that he was the father of her children. The SET for this relationship explains that the spousal-caregiver will repay the care recipient by providing a good care to the older adult who is an honest, helpful, good spouse. Conversely, ill-care will be treated for the elderly if the caregiver has a thought that the benefits from care will return just small.

Reciprocity in the Dimension on Child-parent Relationship. Mutuality between children and parents assures that Thai elderly will have appropriate care from their children, who also regard career advancement and having a good life as a return of care for the elderly. On the other hand, abandonment of an older adult will brand children as sinners. Boon, Jurai and Lamduan presented these views. Lamduan, in particular, had in mind the father-daughter bond and decided to take her father back home despite his abandonment of her and her mother. The SET explains this phenomenon; children provide caregiving for parents because of the desire to repay parents for giving them birth, food, education, guidance, etc. Regarding inheritance, these children will probably inherit more properties from their parents. By calculating, caregiving to aged parents would give back the benefits more valuable than the cost lost (time, care expense and other devotions) during the care period. For example, a caregiver anticipates the residual life of aged parents are not so long, so he/she can devote the available time and resources to look after the elderly as best they can. The expected benefits of what family caregivers do caring are probably to return in form of properties such as habitat, farm, vehicle, for example. In case of non-property, some caregivers believe that luckiness, prosperous, wealth will come to them in the future.

Reciprocity in the Dimension of Non-blood Relationship. Caregiving to a non-blood older adult was demonstrated by a daughter-in-law and a female friend. The daughter-in-law shared the workload of her husband by helping with his father’s care. It was preferable to her that her husband should earn an income from work, rather than give care. The female friend, Lawan, had an older adult in her care because he was a close friend of her husband. In this dimension, SET clarifies the repayment. For the daughter-in-law caregiver, being married to her husband gave her a secure life because her own family would receive the farmable land of the aged father in her care. This is a reason why she had to do caregiving for the father- in-law. Her husband and his father’s properties were more valuable than the cost she invested. For the friend caregiver, an offer of properties was a drive for the best attention and cares. Quitting a paid job to do caregiving is beneficial to her indeed. Not only will the praise from her family, the care recipient’s properties fall on her also.

[See Appendix B the brief stories related to SET]

As illustrated above, the family caregivers would take good care of the elderly whether they have a good relationship. In other words, the care recipients had given material things, attention, love, etc., which impressed the caregivers, who then responded with high quality care. To those care recipients with unfavorable behaviors or unhealthy relationship in the past that portrayed bad impression, so good care and attention from family members or close relatives would not happen to them when falling ill to care recipients. To summarize, social exchange theory helps explain the behaviors of caregivers. Therefore, the relationship between older adults and younger generation, also wife and husband should be raised as an important issue due to changing contexts of Thai society at present. For the childless elderly, there should be a government’s operation to deal with their late life wellbeing such as vulnerable elderly’s registering, screening, reporting which doing by community’s people.

Family Caregiving Trend in Thai Contemporary Society The overwhelmingly changing political, demographic, and socio-economic situations in Thailand have influenced the familial system and attitudes toward family caregiving. In Thai rural areas, there is no exception to this phenomenon. Much literature on Thai family caregiving to older adults previously presented the strength of Thai culture pertaining to highly respectful attitudes to aged people. Gratitude is the way to express esteem to Thai older adults, particularly parents and grandparents (Siriphanich, 1986). In the late 20th century, there Cafrey (1992) explored of elder caregiving in Northeast Thailand. Results showed offspring takes caring for aged parents or relative by providing material and financial supports rather than long–term living to take caring at home. Presently, the elderly’s need for offspring to assist them in later life seems lesser so long as they are still in good health (Laubunjong, 2005). A recent study by Knodel, et al. (2013) reveals a trend in Thai family support dramatically changing resulted from ‘reduced family size’, ‘increased migratory stream’, and ‘lowered chances that aging parents live with or nearby adult children’. This micro research study focuses on individual attitudes toward elderly care at home. The findings revealed the positive and negative feelings on take caring to the dependent older adult. The family caregivers exposed the complexities of suffering they confronted after becoming a caretaker. Their caregiving affected physical, psychological, economical, and societal aspects of their lives. Most of them felt they are facing difficult situations alone, and these feelings are increased by double sufferings from living and family problems including discouraging words from people, and coping with ill-tempered weak elderly. These experiences forced them to think about abandoning a caring obligation. However, there are some positive feelings the gained for example, proud of showing gratitude, returning love to beloved one, The present study reflects that the situation of elder caring in family has been shaking up. First, the elderly helping the dependent elderly at home are increasingly seen in rural communities albeit their adult children settling near their house, adult children pay attention on their occupation rather than quit a paid job to nurture aged parents. Next, elder-caregivers looking after elder-care recipients are widespread in rural society, such as adult children in their 60s are taking care of aged parents in their 80s. They are facing a difficulty on living expenses if lack of support from next generation who reside other location. Finally, Thai tradition and norms

37 about elder care are changing toward the pattern of distant relatives providing material and financial supports while onsite children caring for aged parents is becoming less common.

Spousal caregiver and friend-help-friend trends: The aged parents in remote areas deny leaving out native places or their own house to live with children’s family elsewhere. (Knodel, Kespichayawattana, Wivatvanit, & Saentienchai, 2013). Most children of working age offer remittances to their parents and phone contact is a popular way to maintain a close relationship. The preliminary information from this study also reports about the old aged spouses who take care of each other with support from children who migrated out. The interviews at spousal caretakers' house made it clear that no adult children were living with them, although one older couple was taking care of school-age cousins, and additional burdens would occur if one or both spouses fell ill. Most caregivers and care recipients preferred not to stay with their children or relatives elsewhere because of uneasy feelings. All these implied a dilemma when old and weak adults were given care by no one. Some female caregivers over 60 even had to work for livelihood while caregiving and not all were in good health. There was not much awareness of the aging population in Kanchanaburi, as there were no formal social supports or services for families with disabled elders. Consequently, one concern that arose from this study is who will care for the childless elderly who will grow in number in the next decade. We may see some in active condition giving good cares to other old people in communities. It is hopeful that institutionalized care will be addressed.

Paid caregiver and nursing home: It is generally known that trained caregivers and nursing homes are considerably rare in rural areas, partially because of the existence of familial system, the primary support unit for the elderly. Local people are very interested in the idea of nursing homes on account of the quality of care and facilities they have. Age-friendly places like local elderly health care centers will be the best places for the elderly in rural areas. Other suggestions are that, available health practitioners may be trained in elderly caregiving, with an addition of gerontological knowledge to better support family caregivers.

Family caregiver health: The direct impact of caregiving took a toll on caregivers’ physical and mental health, particularly female caregivers who give care to disabled male care recipients. Extreme exhaustion is typical, and painkillers or other medicine for temporary relief of bodily pains are preferable choices for these women instead of health check-up or seeking advice from a health professional. About mental health, stress is common and intensified in the longer period of caregiving. In fact, the 24-hour care and accumulated tension causes faster physical and mental deterioration in all caregivers, both males and females. Thus, health care and other interventions should be practiced the first priority for them.

Summarizing the Study The situation of full-time elder caring by household members is worrisome. First, spousal caregivers are increasingly seen in rural communities, while their children are busy with work and their own family. Second, the aged caregivers giving care to the aged care recipients are widespread in the rural such as an adult child aged 60s is taking care of aged parents aged 80s. Finally, Thai traditional and norm in elderly care are shifting, from in-home care to distant care with material and financial supports from children living elsewhere.

A social phenomenon specially attended by this study is that the attitude toward the dependent older adult is changing. By observing, the family caregivers have never been socially rewarded by people, but soul-destroying words instead. It seems that elderly caregiving is a dishonored obligation or duty in the view of younger generation. Therefore, this phenomenological study raises the actual experiences of elder family caregivers in rural communities in Kanchanaburi as for having academic, social and policy supports on physical and psychological well-being to this family caregiver group, for example, preparing family member or community volunteer coping with an upcoming aging society, especially distributing knowledge on elderly care to all people to realize and understand aging and it effects.

Chapter 6: Implications and Recommendations

Summarized Conclusion Amidst demographic and social changes, the shrinkage of young population and the stream of outmigration limits the number of adult children who could serve as caregivers to older family members. It seems the primary caregivers are facing the workload alone, which is different from the past when more family members were available to help give care. This qualitative study intends to probe whether or not the modern social is influential to the generation that are being primary caregivers. What to be derived from this study is the caregivers’ experience that was be interpreted and categorized in two sides - positive or negative feelings. Caregivers’ positive feelings should be rewarded, encouraged, and materially supported by members of the informal and formal support networks. When negative feelings arise, there should be case-by-case assistance for caregivers to overcome hardship and difficulty. The contribution of these findings will be background information toward local practitioners for interventions to enhance the quality of life both family caregivers and older adults in rural villages. Regarding the feelings of caregivers, they should be provided with psychotherapy by social or health workers working in communities. This will encourage these family caregivers to view the situation and caregiving in a more optimistic manner. It might be that caregiver education and support services such as respite care provided by community volunteers or professionals) could be really useful interventions.

Figure 5: Factors influenced to elderly care

Social-changed factors Personal factors

Migration & urbanization Agedness Familial and kinship relation Physical and mental health status Culture: norm, religious and belief Economic status Proximity

Caregiving’s perspective

Positive Negative

Positive perspective Family caregivers pay much attention in well-being of disable older adults; the older adults can live longer.

Negative perspective Family caregivers are struck by suffering situation leading to a terrible treatment on older adults. This affects to both caregiver and older adults on well- being.

Relevance and Significance of the Study Not much literature on family caregiving for older adults in Thailand uses phenomenological inquiry. The available studies conducted through different approaches have introduced the positive perception on being family caregiver in terms of gratitude, respect, filial piety and so on. This study’s finding illustrates the world of family member in a suffering process. The chosen cases’ relationships are varied. It is possible that caregiving practice of caregivers for non-bonding older people affects the well-being of both groups. The previous norm of caregiving in Thai society may shift. The findings indicate the reasons of taking care from compassion, moral responsibility, Buddhist believes rather than the willingness to do so. The dependent older adults may be deserted in case of an absence of mutual relationship. They may be even abused because of their physical deterioration and emotional fluctuation, which often cause irritation to some caregivers. In the western world, studies that investigate the lived experience of family caregivers are plentiful. This research documents that family caregiver’s experience physical and emotional fatigue (Connell, 2003; Banerjee & Dixit, 2011; Mendez-Luck, Kennedy, & Wallace, 2008). Family caregivers also encounter changing in life; they tried to cope with attempts to understand the needs of care recipeints, and to tolerate in changing roles (Solomon, 2011). The feelings of ‘aloneness and loneliness’, ‘lonesome’ or ‘isolation’ occur all time during do caring of the frail elderly (Boland & Sims, 1996; Parson, 1997; Gate, 2000). These findings are consistent with the present findings in the rural Thai context, where family caregivers reported feelings such as suffering-alone, insufficient assistance and encouragement from community and neighbors, and so on. For the reasons of taking care of dependent older adults, several previous research demonstrated common themes such as responsibility, moral obligation, compassion, reciprocity, and commitment (Boland & Sims, 1996; Wallhagen & Yamamoto-Mitani, 2006). The findings from this study can contribute to filling gaps in the existing literature on the lived experience of family caregivers. In addition to this, the acceptance and willingness to play the caregiver role are in expectation of these findings. The following implications can contribute to gerontological knowledge, particularly on how to design interventions to support family caregivers. 1. The findings of the phenomenon of being a family caregiver furnish the caregiving contexts of Thailand rural area with insightful notions. 2. New knowledge from the findings can be added to the literature on older adults and aging population. 3. The findings reveal a concern about the support that is available to Thai family caregivers. Based on this research, the support of information and assistance measures, either from the communities, local authorities or the government, are considerably insufficient in rural Thailand.

Implications and Recommendations Social gerontology is a science that attends to ‘the impact of socioeconomic, political, and cultural forces and conditions on the processes of aging, and in the statuses and well-being of older people. The focal goal of social gerontology is to improve the lives of older adults and their family’ (Putney, Alley, & Bengston, 2005, p. 88). This study was undertaken to understand the existing conditions of families that include dependent older adults. The focus was on the

41 psychological well-being on the family caregivers. Our findings manifest both positive and negative feelings while being a family caregiver. 1) Prior to addressing the public policy level, this research’s outcomes could provide information for the community- level that will work closely with local dwellers such as social and health practitioners. The knowledge about elderly-family caregiving will facilitate a rise of programs or interventions to assist either family caregivers or disabled older adults such as informing people in community to understand caregiver’s hardships and providing some resources, rewards, and encouragement to caregivers. 2) For future studies, there should be an investigation using the phenomenology approach in urban areas and even in other provinces. This will result in a better understanding of the current situation of family caregiving in Thailand. And as the childless elderly has been more witnessed, national surveys may need to address this situation. Also as the attitude changed on norms of filial responsibility for aging parents was founded, the qualitative approach may not be the most appropriate answer to the Thai society and the alternatives to this may be systematic analyses or quantitative techniques conducted in various generations. 3) In digital world, innovative inventions and ideas will be more dispersed; perhaps findings from this research could be widely applied to assist the elderly and caregivers especially in many rural areas in Thailand. For example, the Thai government may invest more of these tools and construct relevant infrastructures in these areas, such as an installation of surveillance cameras co-used with mobile phones, emergency signs and hotlines for urgency. These investments will definitely benefit caregivers, the elderly, communities and local practitioners. 4) There was no presence of assistance from health volunteers or local authorities, home check-up and record of households with the disabled elderly. It is necessary to promote volunteering to help caregivers, for instance, the “friend-help-friend”, collaboration in the community to encourage active older adults pay visits (on regular basis) to the households that have elderly-caregiving, and the “young generation-help-elderly”. Other initiatives to be added here are, activities by college students to help caregivers and disable older adults. Such activities may include physical improvements of facilities. 5) Due to migration stream, young generation leaves their hometown, making it barely possible for aged parents to be looked after by their adult children. Paralleling the rise of aged population, aged parents are gradually increasing in number, particularly in the rural areas. The more to be seen is the elderly in their spouse’s care and this foreseen will occur, no matter how aging or disabled they are. At a policy level, policy makers should take needs for long-term care for older adults into consideration. And as stated above, institutional housing can be one of long- term policies, such as establishment community nursing homes with recruitment of local dwellers and trained caregivers for paid jobs. 6) There should be promotion mechanisms to help middle-aged adults prepare for their own aging. Saving and investment in material or social capital are feasible options. This will allow them to hire members of younger generations to provide appropriate care in the future or to secure the care in nursing homes.

Strength and Limitation A major strength of this research study is use of a phenomenological approach used to understand both the meaning that caregivers derive from this role and their positive and negative feelings about caregiving. The research findings revealed the reality of caregivers’ lives

42 shouldered by caregiving and making a living simultaneously. This study presents the dimensional sufferings of primary caregivers in rural areas, and the common reasons for caregiving in Thai current context. The limitation of this qualitative study is the small sample size of merely ten participants who explained their family caregiving experiences. The findings, hence, cannot be generalized to the province, region, or country.

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Appendix A The Stories of Family Caregivers

1. Caring for a Spouse: Noom’s Story (F) Noom is a 69-year-old primary caregiver who has been caregiving for her husbandTep,aged 83, who has been in the first stage Parkinson’s disease for more than four years. Physically, Noom looks like a typical Thai elderly woman. She is somewhat awkward and walks with a little hunchback. Her house is located in a small village in the Kanchanaburi suburb, surrounded by orchards. She lives with her husband in a one-story cement house a kilometer away from the main local road. She has ten children, each of whom has their own family. Her children who live closest to home visit almost every day. She lives on the financial support of her children. Noom’s late life, however, turns out to be fatigued. Her husband is suffering from Parkinson’s disease and currently he experiences shaking in one of his limbs. It developed little by little. On a typical day, Noom treats her husband with three meals a day, bathing, providing medicine, and other activities of daily living. She now finds her days filled with continuous tasks. Her neighboring daughter-in-law was busy feeding her own young children, and she was reluctant to ask for help. Psychologically, Noom seems fairly content, although she occasionally expresses the hope that she wants to stay at a Buddhist temple. Presently, she rarely goes to the temple because she is not as strong as she was in the past. Noom has some health problems and her physical ability has been gradually deteriorating because of advanced age. Three years ago, she broke her arm when she slipped down the stairs, and she periodically has had pain since. Currently, she always has back pain and is not flexible while walking and carrying her sick husband. On days when she is bothered by that symptom, she could not do all housework. At one point Tep stayed at the home of an adult child who took responsibility of hiring a caregiver that the children shared the expenses for. Straightaway, after a half month passed, he was taken back home when it was found that that caregiver did not do a good job. Now in her late sixties, Noom finds it difficult to care for her husband. She needs one of her children to replace her as a caregiver, but none of the will. Sick of this routine, she desires to leave her role as caregiver. Her children told her that she owed a debt of their father that she must pay him back. She thought about abandoning her husband but could not do that.

2. Caring for a Spouse: Wipa’s Story (F) Wipa, a 62-year-old, is a sugarcane peasant living in a little village in rural Kanchanaburi. She looks like a typical Thai woman, about 150 cm tall and looks very thin and tan. She has got multiple health problems with a stroke and gastritis, which sporadically befalls her. She has been taking medicines for controlling those diseases; latterly, she has frequently got a headache so she takes a sleeping pill almost every nighttime. Wipa’s one-storeyed cement house is located on an arable land a kilometer far from an asphalt road. Backyard garden and cattle stable are around her house. The nearest neighbor is around a kilometer in distance. Wipa lives with Sak her husband aged 63, daughter-in-law, and two young children. For two sons, one lives in other district, another in jail. Wipa has become the principal earner after her husband got disabled from a stroke. Subsistence allowances for senior and disabled are

48 also the main incomes. Her life has changed entirely when a doctor said her husband has got partial paralyzed. She now realizes the fact that many tasks are beyond her ability. For the past five years since her husband living with a chronic disease, she has shouldered a responsibility of household expenses and debt burden. Apart from doing household farm, she has to go for being employed work; mowing at neighbor’s orchards. Wipa makes a balance on her tasks; at early morning she prepares meals for her husband, and leaves for work at eight o’clock and back home again at noon due to worrying the fall of her husband. After finishing work at five o’clock in the evening, she does laundry, house cleaning, and cooking. Without supporting from her children, Wipa experiences with a stress resulting from caregiving, routine tasks, and financial problem. She knows well that her disabled husband getting stressful as well; she has always encouraged him when he says he would have been alive not for long. Habitually, her husband Sak is very industrious. Prior to get sick, he had been hard at works on a 20-rai-sugarcrane orchard. Despite getting a stroke and recovered in a later time, he had still been working the same jobs, fertilizing and spraying, until his health developed more deteriorating that the loss of speech took place. At present, he communicates with Wipa by writing on a paper. She usually gives him very good care, from cooking, showering, and taking to bed. However, lately he is often argumentative and physically hurts her, making her temporarily leave for relatives’ houses nearby whenever violence happens. She will come back home when he seems to calm down. She gets bored of his unstable emotion that she wants to leave all burdens behind. The major reason of being with him is the sympathy. Their children have neither asked about dad’s health nor given the parents moral support. Knowing that their children also have no money, she therefore has never asked for money from them. As for Sak, he feels so sad, never been cared by his children. His relatives have also never visited him since falling ill. As for Wipa, knowing well his loving characters such as being a good husband and saying no to smoking and drinking, she still intends to take care of him until death despite his relatives tell her to leave him. Both Wipa and Sak experience many different sufferings in their old years. What most wanted by Wipa is giving him the best care. And for Sak, he really needs the ability to walk and speak again, and being ordained for life if regaining it.

3. Caring for Unlovable Husband: Suda’s Story (F) Suda is a 65-year-old illiterate woman living in a rural village in Kanchanaburi. She has a very small but active body to work as a daily paid worker in a vegetable farm, picking eggplants and chilies for 50-60 baht a day. Normally, she works for three days a week and this is up to her health as sometimes the pain gives her unbearability that she has to get medicine from a local health center. Her old wooden house, located on a hill far from the main road, is surrounded by small herb gardens, dirt yard and fences. This one-storeyed house consists of a bedroom and living room inside and kitchen and bathroom outside. The house was just renovated after she received a grant from local authority. Her financial status is rather poor and this is why she still has to work despite being in her 60’s. Let alone 3,000 baht given monthly by her children and the social pension for older persons, they are barely enough for expenses for other family members. Not only having her husband with leg disability in care, she also has three grandchildren raised by her since they all were little. Their parents have long gone to work in the city and other provinces. They come back home once in a while, but regularly phone their parents.

Her husband’s left leg bends strangely from road accident and not getting treatment. He still can move his body around with a lame leg. His name is Pong aged 65 and having dark skin and small body which is a typical appearance of Thai men. He looks much older than Suda due to heavy drinking in the past. They both have discordant relationship, always quarreling with each other. Not just insufficient money and giving him care that already stresses her out, it is him also that always picks a quarrel with her when she comes back from work. She has felt more stressed living with him and sometimes has to visit her younger sister’s place in order to control her anger. Her neighbors also witness him drunk and show their sympathy by telling her to leave him. Indeed she does want to do it and once kicked him out to his hometown in a northeastern province. He left for a short time before coming back to her. The more tension for her is that, his disability seems not to be cured and she will still have to work alone with three naughty-age grandchildren in her care like this for the rest of her life. For Pong, she has no love for him anymore. She desires a peaceful life in a monastery, but never seen this chance. The reasons of being with him are that, he is her children’s father and she has no idea where to go, and both have spent marriage life for a very long time together.

4. Caring for Blind Wife: Cham’s story (M) Cham, a 70-year-old orcharder living in a rural village in Kanchanaburi, owns a house built in his sugarcane and banana farm situated 1.5 km far from the main road and nearby communities. He lives with a blind wife and a mentally ill son. His two-storeyed house is made of wood and bricks surrounded by chicken, cows and vegetable beds. He is still in good shape and energetic. It is not hard for him for jobs in his 9-rai-sugarcane farm; neither does he need a labor. Indeed, his financial status is sufficient. However, the only one problem sometimes occurring to him is the gastritis. After all, the decayed health does not bar him from working. Preferably, he loves to earn an income by himself, not from his children who also tell him to stop the job. He reasons that they have their own families and burdens, and so he will not ask them for help as long as he stays healthy. He has three children. The oldest son is married and lives in a house in Cham’ farm area. The second son who lives with Cham has mental illness. This son got married, but the marriage life encountered obstacles because of his mental health. Cham decided to take him home instead. Cham’s daughter is also married, living in elsewhere but regularly keeping in touch with him. Nak is Cham’s wife. She is 62, fat, inactive and blind from retinal dystrophy. He tried his best to have her eyes cured at many places and yet her blindness has not been gone. In his everyday life, he cooks, washes clothes and leads her to toilet. After these routines, he goes out working in the farm. If running errands, he’ll lock the house for his wife’s safety. Naturally, he likes social life and community activities. This gives him respect from young generation. At present, he socializes less with community people owing to the worry about his wife. His neighbors, in fact, suggest him to find a new wife too. But the feeling for Nak drives him to perfectly give her the best care and so he has never thought of leaving her. As reasoned by him, she is a good wife and mother, and they both overcame the hard time together. Love represents everything he has done for her. And he is happy taking care of and encouraging her whenever the discouragement and stress fall on her. He believes that his wife’s suffering today is a result of karma in previous life.

5. Caring for Fearful wife: Chauy’ Story (M) Chauy is a 79-year-old man living in a large village near the city in Kanchanaburi. His wife, Rung, is 79 as well. Chuay is thin and moderate tall like other Thai men, but quite strong to work in a sugarcane farm. Initially, he was from a northeastern province and settled down in Kanchanaburi after retirement from a state enterprise. He now has spent his retiring years here for almost 20 years. All of their children have moved out after marriage, living in other provinces and nearby villages, still taking turn to visit their parents at the month’s end. Furthermore, they have career advancement, maintain regular phone contact with him and care about special occasions. The ischemic stroke had struck him once and he recovered from it by strictly taking prescribed medicine. He has never had it since then. He also tries to take good care of himself as he does not want to give his children worry. Nowadays, he lives on the pension and children’s supports. As for Rung, she is very unhealthy from chronic illnesses that require continual medical care as well as in-home personal care. She fell two years ago and was diagnosed as having hip fracture, causing pain when walking. She fears the hurt and pain from the operation and so Chuay has to give her care alone. Each day he cooks, feeds and takes her to toilet. Sometimes he takes her out to the market to see their children. He worries about her a lot as she is easily anxious of many things, unable to stay alone and even make a phone call.

6. Caring for Aged Parents: Boon’s Story (F) Boon is a 44-year-old divorced woman living a rural village in Kanchanaburi. She has two children and owns a restaurant built in her one-storeyed house area located on the main road to the village. Generally, she is happy with the business, earning well from it and having many clients. Nonetheless, her second husband recently hurts her physically for jealousy. He did not want her to run the business and talk to any male customer. She felt so miserable that she thought of suicide. Currently, this family problem is solved because of the Court Order that forces them to live separately. Boon considers herself as a healthy and hard-working woman who earns major income for the family. Her family has six members, including her. Her oldest son is a soldier and helps her with food business when having a free time while her second daughter does it full-time. Her youngest son, born to the second husband, is a school age. Her parents are very old, in their lately 80’s. In spite of having five siblings, Boon is the only child taking care of their parents. Her oldest sister, aged 60, just had appendix removed and needs a caretaker. Her second oldest sister has to take care of her old husband and children. And the third one has gotten paralysis. Her older brother once asked their mother to live with him, with his wife taking care of her. Boon did not want to bother them and so took their mother back home. Her mother is prolonged best rest, completely unable to rely on her and suffers delusional. Boon has been the full-time caregiver who also has burdened all related expenses for almost two years now. In Boon’s daily living devoted to her old mother, Boon and her daughter change disposable adult diapers, feed, bathe and give mother antihypertensive medicines before preparing things for their restaurant. They feed again at lunch time. Boon’s mother defecates one to two times per hour, irritating Boon sometimes when hearing calls for diaper change. However, while cooking for customers, Boon chooses cooking, and then comes to her mother. It happens many times that Boon cares about customers’ feeling when seeing her changing diapers and cooking. The main reason for Boon’s care giving to her mother is that, all of her siblings have their own burdens and health problems from older age. Comparing to Boon, she is still active and

51 receives helps from her children. She feels her parents are now in good hands of her without any difficulty. For her aged father that is still a little bit self-help, Boon has hired a person in the local to feed food and cleaning. Her mother was separated from father due to the father got irritable from mother’s annoying.

7. Caring for Senile Mother: Jurai’s Story (F) Jurai is a 58-year-old widow woman who is a primary caregiver for her aged mother, Orn aged 89. She lives in a brick and wood, two-storey house with backyard area around. Her house is near a main local road and surrounded by neighbor’s houses. Jurai is in good health for her age and she looks very vigorous. She does not work; she has got financial support by her children. In this house, Jurai has four children but the youngest son living with her, two lives in the city of Kanchanaburi, and one son is a monk. Her husband passed away many years ago and her siblings then asked her to look after their mother who had been hospitalized for many months for emphysema. After recovery, their mother was sent home, unable to rely on her but a respirator. She kept saying about suicide. Because of Jurai’s decision to live with and giving a good care, the ill mother could walk again and be more self-reliant. Jurai now can spare her time for village activities and with friends. Looking back to past, Orn and Jurai’s relationship was rather terrible. Orn was a smoker that consequently caused her the emphysema up to present. She is very old, with poor eyesight and bony body currently. However, unlike the past, she becomes stronger and has a straight back when walking. In day time, she can walk in house area and use toilet alone. In night time, she needs Jurai’s help for changing diapers. Actually, Orn still needs oxygen provided once per three days as she cannot breathe. Jurai has dedicated herself looking after her mother and this has finally improved their relationship. Orn always hugs Jurai for thank you and Jurai gives “I love you” in turn with joy. Their neighbors always praise Jurai for the dedication to her mother.

8. Caring for Depressive Father: Lamduan’s Story (F) Lamduan is a 49-year-old Thai woman living in a small village near downtown Kanchanaburi. She is somewhat chubby and washed out. She lives in a one-storey house having no space close by a main local road that her mother own since she was born. Her large family is composed of ten household members: those are herself, parents, a husband, a sister, and five grandchildren. She is married but childless, however, she have raised her grandchildren as her own children. Relationship among family members is very harmonious, everybody depends on each other. Lamduan is quite in poor health; she has got several congenital diseases; asthma, and osteoarthritis, which keep pain on her legs periodically and cause her not able to work hard. Occasionally, she is hired to harvest chili plants nearby radius area. Her husband, a mason, is who works for making a living for the household. Household expenses and care cost of aged parents are shared with her sister and adult grandchildren. Lamduan has been a caregiver for the aged father for five years. Her father - Pin who is not in good health- was supposed living with depression; he barely speaks to any members at all. Every daytime he always sit at the same point, a favorite litter, starring out hopefully to see his sons to visit him. Last five years, his second wife which Mr. Pin had lived together for more than 20 years elsewhere passed away. His sons denied caring Mr. Pin due to shoulder their own family burdens and claimed that having no time to treat. So Pin was left alone. Not for a long time after his second wife dead, Lamduan’s family was called to pick Pin up. Over the period of time, Pin does not see his loved sons coming here just once.

Although Mr. Pin who hardly ever nurtured Lamduan; he separated himself from Lamduan’s mother since she was aged four. This is leave something out of consideration. She and sisters have well-treated the distant father, especially when Mr. Pin needs a medical treatment. A word ‘father’ is the important reason for caring aged father of Lamduan. She does not want whoever condemns her obligation on caring the father. However, she feels delightful on neighbor’s praises.

9. Caring for a Friend: Lawan’s Story (F) Lawan is a 60-year-old Thai women living in a rural village in Kanchanaburi. She is moderately plumb and about 150 cm tall. She is in fairy health in her age, though she often experiences on straining her legs from lifting and dragging the body of caregiving receiver. One of these days, she goes to see a doctor at local health center as for taking medicines alleviating muscle pain. Prior to be a caregiver, she was a resort worker which earned income every month. At the present, she becomes an unpaid caregiver who takes caring of a person who has no blood relationship. Her private life has changed entirely due to around-the-clock caregiving for the care receiver. She has been a primary caregiver for two years caring a close friend of her husband - Nop, a male fragile older adult who is living with quadriplegia. She spends most of the day doing caring of Nop. Every morning, after cleaning over his body, she takes him out of the bed to watch the news on a television, feeds food and fluids, and take him to the toilet before sleeping all day long, and the same in the evening. Lawan stays with Nop in his house even at night because she can provide a prompt help to Nop, especially does turning him over for preventing a bedsore. Always, she has to practice him a therapy massage over his body. She is familiar with Nop very well. She was asked by her husband to look after him since his symptom began to progress. She is encouraged by her husband and supported from her children in regard to caring costs for the care receiver. At the same time the gossips from neighbors has discouraged her once in a while. Commiseration toward Nop that his siblings ignored is the main reason for taking care of, although tiredness physically and mentally has been up to Lawan frequently. For her care recipient, Nop, he was a 64-year-old retired worker for a state enterprise. He lives alone in a one-storeyed cement house adjacent to Lawan’s house. He does not have his own family, and his siblings living in elsewhere. Earlier in life, he had spent money for smoking, drinking, and gallivanting; those behaviors caused him having got health problem in a late life. Not long before his retirement, he had bought a land and settled down with a small house near his friend's house. With the symptom of stroke often occurred in his late 50’s, before acute illness, he had to depend on the couple whose are the like-siblings to help him whether he gets sick or until pass away.

10. Caring for Father-in-Law: Kaew’s Story (F) Kaew, aged 31, born and raised in this community, married young at 17 years old. She is in a moderate shape 150 cm tall approximately. She is a housewife taking care of two kids in elementary years and her husband who is sugarcane farm owner. She is unhealthy because of low blood pressure, but sometimes she works for hire in order to support the family. Her one- storeyed house has five members; namely, herself, her husband, two children and her husband’s father named Prem.

It has been two years now she has been the primary caregiver of Prem, an 83-year- old and non-self-reliant man. Prem has diabetes, hypertension, gout and delusional, and their symptoms get worse lately, disabling him to get up and walk. She and Prem are not close and rarely talk to each other. She always gets irritated when seeing him unable to get up. Besides she has to help him if he calls for help from her husband who goes out to the farm. Before living under the same roof with Kaew, Prem had lived in the next house in the same area with his third wife who had been paralyzed. In a later time, her children had brought her home to take care. As for Prem, many diseases had ailed him in declining years without anyone’s help. The latest severity had resulted in the loss of ability to walk. Also due to worring about him staying alone at night, Kaew’s family decided to take him to live with them. To Kaew, the caregiver’s duties are not pleasant. She often says that no one knows about it unless being a daughter-in-law. She does not want this duty at all, thinking her life would be much better without the duty to take care of her husband’s parent. Her husband keeps encouraging her and often with the words that, who is going to this if it is not her. Kaew has to accept it finally. As to her relatives, they always give her moral support and reason that he has many plots of land for her family. Indeed Kaew has no proud looking after the elderly. And believing in the karma, she realizes that what she has done to Prem may be returned to her by her daughter-in-law.

Appendix B Brief Stories Related To Social Exchange Theory

1. Noom Case This case is consistent with the theory. The spousal relationship disallowed Noom to avoid the care responsibility for her husband. However, since her husband had performed his duty as a household leader, father, and husband before the Parkinson’s disease disrupted his life, Noom had to give him good care. Adult children living away from the family home also always gave them support, both money and encouragement.

2. Wipa Case Prior to caregiving, the relationship between the caregiver Wipa and her care recipient Sak had been so smooth, with them relying on each other. Sak treated her and the children very well. Wipa therefore had to take good care for him over the period of his poor health regardless of undesirable behaviors and emotional instability after he fell sick. This case represents a favorable return to the care recipient for good things done for the family.

3. Suda Case Having a terrible relationship with her husband Pong before he became ill, Suda no longer loved him. After he became disabled, she chased him out of the house every time they had a fight. He got little attention from her, but she fed him and gave him money every day. They rarely talked to each other, but had some exchanges. To Suda, the only reason backed up this poor caregiving was bad memories of being hurt by Pong, physically and mentally throughout the marriage life. Being disabled did cause positive changes in Pong’s behaviors such as not drinking alchohol, in order to have Suda still live with him in his house.

4. Cham Case Cham and his wife Nak deeply loved each other. Before becoming blindin one eye in his late 50s, she had given him very good care. After an accident, she dedicated herself to him until he was completely cured. To him, she was a role model wife. When she could not take care of herself, he had to look after her as best he could.

5. Chuay Case Chuay and his wife Rung had lived together happily, helping each other to have a secure financial status and provide for their children. Rung impressed Chuay by being a good wife. Currently, Rung needed assistance with tasks of daily living. Chuay had to take care of her even though he was getting very old.

6. Boon Case Caring for his aged parents was a big responsibility for Boon. Boon always thought that no matter how hard her life was, she was repaying both her father and mother because of everything they had given her. She believed that by holding on to the Buddhism’s believe, she would receive the same care from her children.

7. Jurai Case Jurai and her mother had had a negative relationship. However, none of Jurai’s siblings took care of their mother. It was only Jurai who took on the full care duties for the mother, who later appreciated Jurai’s efforts. When Jurai gave her a bath, her mother often hugged her. This scenario illustrates changing behaviors of the elderly in response to caregiving.

8. Lamduan Case Lamduan had had a distant relationship with her father for over 20 years. In spite of no love and attention from him in the past, she provided care out of compassion, not repayment.

9. Lawan Case Lawan and Nop her care recipient were friends, having known each other since they were young. In fact, Nop was her husband’s very close friend. Nop had known that his chronic diseases would result in disabilities in the future. So he had asked Lawan’s family to take care of him when he became disabled. He had said he would give his property to Lawan in exchange. This indicates that some older adults have to provide a benefit in exchange for caregiving. Lawan, as caregiver, also gave a promise to take care besides an expectation of inheritance. She accepted this obligation and provided Nop good care.

10. Kaew Case The emotional distant relation between Kaew and her care recipient, her father-in-law Prem, made Kaew feel sick of being a family caregiver to take care of disabled husband’s father. The two rarely exchanged conversation. She only provided care to relieve her husband’s burden. Nonetheless, Kaew’s relatives encouraged her to continue caregiving because Prem gave Kaew’s family arable land.

Appendix C Questions to Guide the Interview

Demographic Data Name: ……………………………………………………………………………………….……... Age: ………………………………………………………………………………………….…….. Marital status: …………………………………………………………………………….………... Occupation: ……………………………………………………………………………….……….. Relation to care receiver: ……………………………………….…………………………………. Length of time of caregiving: ……………………………………………………………………... Health of the care receiver: ……………………………………………………………….…….....

Probing Question  Can you please tell me how long you have been a caregiver and how you chose to take on that role?  What is your experience of time for yourself as you care for a weak elder, or elderly relative while raising a family?  Could you tell me some specific happenings or a time that can illustrate what you just said?  How do you feel about being a family caregiver?  Why do you do that duty?  If your life has changed since you became a caregiver, please describe the change.  Please describe your experience with your caregiving obligations.  Please describe how you feel about the control you have over your life as a family caregiver.  Please describe how you feel about balancing your work and caregiving  Is there any activity you do that allows you to be spontaneous?  Do you have anyone that you can consult with?